National Education Day
|
|
- Britton Short
- 6 years ago
- Views:
Transcription
1 Presentation to National Education Day September 17, 2016
2 Mission Statement Founded in 1980, the Immune Deficiency Foundation is the national patient organization in the United States dedicated to improving the diagnosis, treatment and quality of life of persons with primary immunodeficiency diseases through advocacy, education and research
3 Sources of Revenue Industry contributions and grants Individual contributions Walks and other special events Government grants and contract revenue
4 Trends Better understanding of PI More PI genetic defects being discovered Increased focus on comorbidities Increased need for patient & provider education Barriers to care Insurance Cost increases and shifting to patients Restrictive formularies, sites of care, narrow networks access to specialists Reimbursement reductions CMS Drug Pricing
5 Trends (continued) Patient-centered care Precision Medicine: PCORI, FDA, CMS, NIH Patients want more customized resources Patient reported outcomes Patient surveys, IDF ephr, IDF PI CONNECT New Products and technologies Better diagnostics More choice in IG therapy PI Patients need for antibody protection Patient friendly infusion technology
6 2016 IDF Strategic Directions Reach more patients IDF Outreach Initiative and other outreach to medical providers Patient education meetings and events throughout the country Expanded Volunteer Network Ever Increasing Online Presence IDF Direct (Newly diagnosed patients) Increase awareness and understanding of PI Educational materials and programs for patients and medical professionals Increased awareness efforts through Walk for PI and IDF Volunteers IDF Plasma Partners Program Improve access to quality care Public Policy Advocacy Patient Advocacy IDF ephr
7 2016 IDF Strategic Directions (continued) Research Surveys More publications for a stronger impact USIDNET and IDF PI CONNECT Interoperability and improvements for disease specific groups PCORI Collaborations with PIDTC and CIS IDF Research Fund Increase and diversify sources of support Walk for PI Engage medical facilities Major Gifts Research activities
8 IDF in 2021 Increase the number of patients connected to IDF to 25,000 or 10% of prevalence. (Current number of known patients is 17,000+) Increased disease-specific focus Enhanced outreach and partnership with physician offices through IDF Outreach Initiative, increased volunteer presence, visibility of Walks, involvement in patient meetings Patients with PI have improved access to affordable expert care. All states screening for SCID, and the KREC test for XLA added to the National Newborn Screening Panel
9 IDF in 2021 (continued) Through IDF research initiatives, provide robust data to better understand the patient experience, with the goal of improved patient care. Consistent funding for our research infrastructure, PI CONNECT, IDF ephr, USIDNET Registry, Surveys and Research Fund Assure IDF continues to be the trusted resource for patient information through continuously improved accessibility, educational programs and materials. Increased sources of support: $1,000,000 net from IDF Walks, developed partnerships with more organizations that provide PI medical services, strengthened IDF Legacy Society and major gift fundraising.
10
11 Increasing Our Reach IDF Website Primaryimmune.org ,219,853 sessions 62.5% increase over 2014 IDF ADVOCATE Printed Newsletter % increase over 2014 (current circulation 40,000+) Primary Immune Tribune enewsletter % increase over 2014 (current circulation 31,500+) Social Networks % increase of followers over 2014: IDF Friends 25% IDF Common Ground 38% Facebook 28% Twitter 49% Instagram 274% LinkedIn 150% 12 New epublications for Kindles and Tablets New International Section of website highlighting translations
12 April - National PI Awareness Month April World PI Week Combined efforts of CIS and IDF Invited all to THINK ZEBRA! and wear zebra Community shared the IDF Learn More poster, contacted local media, reported activities and submitted selfies TZ the IDF Zebra continues to create awareness across the country
13 2016 Meetings Around the Country 2 IDF Retreats 2 Teen Escapes 29 State-Level Patient Education Meetings Dozens of Local Get Connected Meetings
14 Boston, MA June 17-19, 2016 Salt Lake City, UT August 19-21, 2016 Total Attended = 268 Total Attended = 175 Outstanding educational presentations and life management sessions Strong youth and teen program Sponsors have the opportunity to attend and exhibit Informative volunteer sessions Special CGD programs Innovative Young Adult Program (Boston) Young adults and older teens with SCID Session (Salt Lake City)
15 IDF National Conferences 1,366 Attendees largest ever! 12 Countries 39 States 69 Speakers 182 Attendees in the Youth Program 98% Would Recommend the IDF Conference 98% Said the Exhibitors were a Valuable Addition Planning IDF 2017 National Conference Anaheim Marriott, Anaheim, CA, June 15 17, 2017 Increase focus on disease-specific sessions Create new sessions and activities
16 2015 National Conference
17 IDF Teen Program IDF Teen Escape Develop coping skills, promote friendships, receive guidance on living with PI. Northbrook, IL July Charlotte, NC July IDF Common Ground App was launched in April in 2016 Life Stage section on website Young Adult Program Young Adult Webinar Series Feedback and discussion session at IDF Retreat Newton, MA June 17 19,
18 IDF Volunteer Network Local Efforts, Nationwide Impact Dedicated volunteer manager Designed online and print training modules with orientation for all volunteers, and position specific guides and training Expanded volunteer opportunities Health Access Advocates IDF Walk for PI - Advisors, Planning Team Members, Day-of-Walk Volunteers Event Facilitators Peer Support Coaches Plasma Center Visitors Teen Council Members IDF Liaisons IDF Get Connected Leaders Office Assistants
19
20 IDF Walk for PI: 2015 Boston - $34, walkers Cleveland - $28, walkers Minneapolis - $31, walkers Philadelphia - $30, walkers Chicago - $66, walkers New York City - $118, walkers Los Angeles - $41, walkers Houston - $37, walkers Fort Lauderdale - $49, walkers Community Walks - $12,943 Virtual Walk - $8,912 Total Raised by Walkers - $461,576 3,524 walkers Total Raised By Walkers & Sponsors: $1,000,000+
21 IDF Walk for PI Walk Locations Cleveland Boston Minneapolis St. Louis Philadelphia Chicago New York City Atlanta Charlotte, NC Los Angeles Houston Fort Lauderdale September 25 October 2 October 2 October 9 October 16 October 23 October 23 October 29 November 5 November 6 November 13 November 20 Community Walks: Blountville, TN September 17 Omaha, NE September 18
22 IDF Plasma Partners Program Purpose Create awareness of PI Shows relationship between patients, donors and employees in plasma collection centers Raise funds for IDF programs
23 IDF Medical Programs IDF Consulting Immunologist program - Opportunity to consult with expert clinical immunologists IDF & USIDNET LeBien Visiting Professor Program - Provides teaching hospitals with an expert clinical immunologist Exhibit at medical conferences throughout the country IDF Nurse Advisory Committee - Resource for nurses treating patients with PI IDF Medical Advisory Committee - Support the mission of IDF through the development of science based standards
24 The United States Immunodeficiency Network (USIDNET) oversees a Registry of Patients with PI. Funded by NIAID A program of IDF Physician-validated clinical data on over 5,800 patients with PI Laboratory results Genetic and molecular information Diagnostic criteria Longitudinal Data Incumbent upon clinicians updating patient records over time Approved for 5 more years of funding by NIAID!
25 Electronic personal health record designed specifically for the PI community Transforming how patients manage their health Track symptoms, Ig infusions, medications, log health information Access via computers, tablets, phones Features: Syncs with Microsoft HealthVault Set health/fitness goals and track progress Connection to PI CONNECT ephr app Quality of Life Survey Health Snapshots Health Calendar IDF ephr App
26 IDF PI CONNECT is advancing research! Funded through Patient-Centered Outcomes Research Institute (PCORI)
27 A collaboration of patients and researchers for primary immunodeficiencies Empowers users to help others living with PI by logging experiences on the IDF ephr Access to an exclusive research forum where patients can discuss and offer opinions about PI research and participate in webinars IDF ephr patient de-identified data becomes part of the USIDNET patientconsented registry All of this can lead to improved diagnosis and treatment of PI 2,906+ users in ephr 1,840+ users in PI CONNECT
28 PROMIS-29 QoL Survey Originally launched in November 2015 Ran for 4 weeks 311 adults participated Basis for CIS Abstract Overall, PI patients demonstrated significantly worse HRQoL scores compared to the general population. Women reported poorer HRQoL scores than men and patients aged 35 to 44 reported the lowest HRQoL scores. Reopened every 6 months, patients prompted to take. Longitudinal data integrated into USIDNET Patients get a custom report upon completion Patients reported higher anxiety, depression, fatigue and pain interference along with lower physical function and social roles Next step: Does IgG level correlate?
29 Patient Advocacy Steady increase of requests to IDF Expect this trend to continue Inquiries related to diagnosis, treatment, health insurance, peer support, physician location and literature requests The top reasons that patients contact IDF are for: Education Medical or treatment questions Locating an immunologist in their area Health insurance problems Volunteering
30 IDF Patient Advocacy Reason For Call Report: January to December Service Type Patient Education Total Insurance Co-Pay Assistance Premium Assistance General Insurance Issues Medicare Insurance Issues Medicaid Insurance Issues Uninsured Insurance Denials for Treatment Disability IDF Patient Advocacy Reason For Call Report: January to December Manufacturers Compassionate Care Program Total Non-insurance Product Choice Problems Identifying Less Expensive Options Employment Discrimination Diagnosis/Locating a Specialist Medical or Treatment Questions Peer Support Volunteer Network School Issues Consulting Immunologist (discussed with patient) Other GRAND TOTAL Unique Patient Number Consulting Immunologist Requests
31 Public Advocacy
32 2016 IDF Advocacy Day April Approximately 75 people including patients, family members and friends attended 135 meetings Focus of meetings was the proposed Medicare Part B Drug Protocol Demonstration
33 IDF Advocacy Initiatives To Address Access to Care Barriers IVIG Medicare Demonstration Project Medicare Part B Drug Payment Model AWP to ASP +6 (subcutaneous) Cadillac Tax Repeal Specialty Tiers Co-insurance Biosimilars ACA implementation Patient Assistance Legislation SCID Newborn Screening
34 42 States Currently Screening for SCID 88% of all newborns in the U.S. are receiving SCID screening
35 Newborn Screening for Severe Combined Immune Deficiency IDF advocates for SCID inclusion on their newborn screening panel of every state Many states use IDF educational materials in their follow up programs APHL SCID Video SCID A Family s Journey Through Isolation
36 Highlights include: National Patient Surveys (1996, 2002, 2007, 2012) National Treatment Surveys (1997, 2003, 2008, 2013) 2009 IDF Patient Survey (Web-based) Prevalence Survey (2005) Survey Research Better Information for Better Outcomes More than 40 major surveys of patients & medical professionals since 1995 National Internet Treatment Survey of PIDD in the U.S. (2010) Medicare Access to Care Surveys: Patients, Physicians, Hospital Pharmacist Directors (2006, 2007) Physician Surveys Pediatrician (2007), Family Practitioner (2009), Pulmonologist (2011) Use of IVIG in Treatment of PI IDF and AAAAI (2009) Early vs. Delayed Diagnosis of SCID (2010) Primary Immunodeficiency & Women s Reproductive Health Survey (2012) Health Insurance & Primary Immunodeficiency ( )
37 Average Time to Diagnosis from Symptom Onset: All Diagnoses , ,2 12,4 8 6 Median = 6.0 Median = Median = (N= 1,397) (N= 1,137) (N= 1,413) Sources: 2002, 2007 & 2012 IDF National Patient Surveys
38 Age at Diagnosis Patients Currently Receiving Ig Therapy % 30% 32% 30% 25% 20% 24% 20% 25% 25% 22% 18% 25% 15% 10% 5% 0% 11% 10% 10% 9% 8% 7% 6% 5% 4% 5% 2% 2% Sources: 2002, 2007 & 2012 IDF National Patient Surveys
39 Health Status Improves after Ig Therapy 50% Prior to diagnosis only 15% good or better After Diagnosis 61% good or better Prior to diagnosis 40% Past 12 months 33% 34% 30% 23% 24% 26% 25% 20% 10% 0% 9% 10% 5% 5% 1% 2% 3% 1% Excellent Very good Good Fair Poor Very Poor Blank Q9. Would you describe his/her health in the 12 months prior to diagnosis..? BASE: Those who are currently using IVIG or SCIG Therapy N=1,428 Q61. Would you describe his/her health in the past 12 months as..? BASE: Those who are currently using IVIG or SCIG Therapy N=1,428 Source: 2013 IDF National Patient Treatment Survey
40 Patients in the General Community: A National Probability Survey of the Prevalence of Patients diagnosed with PI IDF Prevalence Survey National telephone survey of 10,000 households 1 in 1,200 persons diagnosed with PIDD Estimate of 250,000 PI in the U.S. 95% confidence level around the estimate suggests 152,000 to 361,000 diagnosed PIDD in the U.S. 57% of the patients in the survey had a diagnosis for which Ig therapy is indicated. (66% if IgG Subclass Deficiency is included) Only 22% of antibody deficient patients currently treated with IVIG
41 Recommend IgG Therapy for All or Most Patients by Diagnosis: Immunologist, Pediatrician, Family Practice & Pulmonologist Comparisons 100% 92% 100% 98% 90% 89% 80% 60% 80% 74% 66% 63% 70% 51% Immunologist Pulmonologist Pediatrician Family Practice 40% 35% 20% 0% SCID XLA CVID Q. Would you recommend IVIG/IgG Replacement therapy for all, most, some or few to no patients with. All or most Sources: IDF-AAAAI 2006 Survey of the AAAAI membership; IDF 2008 Survey of Pediatricians; IDF 2009 Survey of Family Physicians
42 IDF Surveys of Specialists and Primary Care Physicians: American Academy of Allergy, Asthma and Immunology (AAAAI), Pediatricians, Family Practice & Pulmonology Survey Year Mode Incentive Responses AAAAI 2006 Internet No 405 Pediatricians 2008 Mail Yes 560 Family Practice 2009 Mail Yes 528 Pulmonology 2011 Mail Yes 499
43 IDF Health Insurance Surveys: 2014 & Web-based Survey Up to 60 questions (depending on responses) In the field: 11/14/2014 to 12/4/2014 Over 1,500 completed, unduplicated respondents completed the survey 2015 Web-based Survey Up to 50 questions (depending on responses) In the field: 12/04/2015 to 12/31/2014 Over 1,600 completed, unduplicated respondents completed the survey
44 Delayed or Skipped Ig Therapy in Past Year 32% Yes 30% Yes 68% No 70% No 2014 Top 5 reasons for Skip % Problems with health insurance 41 Scheduling conflict 28 Too sick for therapy 20 My cost for therapy too expensive 12 Side-effects were/are too great Top 5 reasons for Skip % Problems with health insurance 36 Scheduling conflict 30 Too sick for therapy 17 Side-effects were/are too great 10 My cost for therapy too expensive 8 Source: IDF 2014 and 2015 Health Insurance Survey Since January 2014/2015, has there been a time when the person skipped or delayed their Ig therapy? Base: Current Ig users, 2014, N=1,183; 2015, N=1,254
45 International Patient Organisation for Primary Immunodeficiencies (IPOPI) IPOPI is the association of national patient organisations dedicated to improving awareness, access to early diagnosis and optimal treatments for primary immunodeficiency patients worldwide
46 55 National Member Organisations
47 Board of Directors Jose Drabwell, Chair (UK) Martine Pergent, Vice-Chair (France) Christine Jeffery, Treasurer (Australia) Marcia Boyle (USA) Adrian Gorecki (Poland) Dragana Koruga (Serbia) Bruce Lim (Malaysia) Roberta Pena (Argentina) Violetta Kozhereva (Russia) Staff Johan Prévot Executive Director Leire Solis, Health Policy & Advocacy Manager Magda Lourenço, Communications Project Manager Carla Morgado, Executive Assistant Carol Tavener & Clare Glynn, Fincances Medical Advisory Panel Prof. Bobby Gaspar, Chair (UK) Dr. Nizar Mahlaoui, Vice Chair (France) Dr. Adli Ali (Malaysia) Dr. Tajed Avcin (Slovenia) Prof. Aziz Bousfiha (Morocco) Prof. Andrew Cant (UK) Dr. Monika Esser (South Africa) Prof. Amos Etzioni (Israel) Prof. Alain Fischer (France) Dr. José Franco (Colombia) Prof. Antonio Condino Neto (Brazil) Prof. Luigi Notarangelo (Italy/USA) Prof. Surjit Singh (India) Dr. Joanne Smart (Australia) Prof. Martin Van Hagen (The Netherlands) Prof. Klaus Warnatz (Germany)
48 Objectives
49 IPOPI NMO Support Programmes and Toolkits Awareness Campaign Toolkit Broadcast Guideline Government Fact Sheet Media Guidelines Template Celebrity letter Corporate Sponsorship Guideline Celebrity guidelines Family/School guidelines PID leaflet guideline Facts for the Medical Community Guideline World PI Week Toolkit NMO Website Toolkit Advocacy and Media Training Toolkit Online resources: IPOPI website contains a wealth of other resources (publications, position statements, latest news, IG database..) Press conference check list Effective use of the media Government outreach Broadcast guideline Celebrity guideline Medical profession factsheet Government relations: making your case effectively Government factsheet Media guideline World PI Week toolkit
50 IPOPI Biennial Meetings with Past Meetings: 1992 Lugano, Switzerland 1994 Sitges, Spain 1996 Goteborg, Sweden 1998 Rhodos, Greece 2000 Geneva, Switzerland 2002 Weimar, Germany 2004 Versailles, France 2006 Budapest, Hungary 2008 Den Bosch, Holland 2010 Istanbul 2012 Florence 2014 Prague Upcoming Meeting: 2016 Barcelona
51 Website IPOPI Website provides efficient online resource for PID patients and stakeholders and increased visibility (5-fold increase in visits & page views in last 2 years) New Social Media Tools
52 Patient Information Leaflets
53 Merci! Thank You! For more info visit
233 Education 290,000+ EDUCATION, ADVOCACY & RESEARCH OF PI. Presentations. Education Materials 15,429 ATTENDEES. Newsletters: Leading the Way in
Leading the Way in EDUCATION, ADVOCACY & RESEARCH OF PI 233 Education Presentations 15,429 ATTENDEES 128 Cities 34 States 2 Countries 7,883 1,692 REQUESTS for Support and Information NEW IDF Patient &
More informationWelcome and IDF Update July 20, John G. Boyle President & CEO
Cleveland, OH Welcome and IDF Update July 20, 2018 John G. Boyle President & CEO This Evening s Topics About IDF What to Expect This Weekend How We Can Help You (Education & Support) What We Do (Advocacy
More informationImmune Deficiency Foundation. Dedicated to Improving the Diagnosis, Treatment and Quality of Life of Persons with Primary Immunodeficiency Diseases
Immune Deficiency Foundation Dedicated to Improving the Diagnosis, Treatment and Quality of Life of Persons with Primary Immunodeficiency Diseases About the Immune Deficiency Foundation Marcia Boyle, IDF
More informationIPOPI First Vietnamese PID Patients-Doctors National Meeting Held at the Baoson Hotel, Hanoi, Vietnam hrs 3 rd December 2015
IPOPI First Vietnamese PID Patients-Doctors National Meeting Held at the Baoson Hotel, Hanoi, Vietnam 9.00-15.00hrs 3 rd December 2015 Report 1. Introduction The first IPOPI Vietnamese PID Patients-Doctors
More informationCleveland County Asthma Coalition History. The Cleveland County Health Department received a grant for Preventing and Controlling
Cleveland County Asthma Coalition History The Cleveland County Health Department received a grant for Preventing and Controlling Childhood Asthma from the Asthma Program, Women and Children s Health Section,
More informationBest Practice Sharing Session The Colorado Patient Partners in Research network: Reaching Stakeholders through Social Media Kaiser Permanente
Best Practice Sharing Session The Colorado Patient Partners in Research network: Reaching Stakeholders through Social Media Kaiser Permanente 1. Join the WebEx 2. Select I will call in ; Dial 1-650-479-3207
More informationPosition Description Ovarian Cancer Australia Support Coordinator, Support Programs
Position Description Ovarian Cancer Australia Support, Position Purpose The Support, is one of three roles responsible for the further development, coordination and implementation of Ovarian Cancer Australia
More informationOWIT International Chapter Leadership Webinar March 7, 2018
OWIT International Chapter Leadership Webinar March 7, 2018 Orientation and Training for OWIT Chapter Presidents and Board Members, Representatives to OWIT Intl Board, Membership Directors, and Administrators
More informationTuberous Sclerosis Australia Strategic Plan
Tuberous Sclerosis Australia Strategic Plan Last updated 27 November 2017 1. Our vision for the lives of people affected by tuberous sclerosis (TSC) 1. The impact of a diagnosis of TSC Tuberous Sclerosis
More informationSTRATEGIC PLAN
STRATEGIC PLAN 2016 2020 Promoting and supporting excellence in research www.immunology.org BSI STRATEGY 2016 2020 EXECUTIVE SUMMARY OUR MISSION Our mission is to promote excellence in immunological research,
More informationOUR GOALS. For the detailed plan visit
STRATEGIC PRIORITIES When organizations reach milestones such as a golden anniversary, leadership should not only seize the opportunity to revel in past successes, but also proceed with a renewed focus
More informationSTRATEGIC PLAN CONTENTS VESTIBULAR.ORG 1. Introduction 2. Overview 3. Mission 4. Vision 4. Values 4.
STRATEGIC PLAN 2017-2021 CONTENTS Introduction 2 Overview 3 Mission 4 Vision 4 Values 4 Core Focus 5 Goals & Objectives 6 SWOT Analysis 9 Long-term Milestones 10 Action Plan 11 800.837.8428 VESTIBULAR.ORG
More informationReport and Action Plan
PID Awareness Campaign Workshop 17 May 2013, São Paulo, Brazil Report and Action Plan I. Introduction On Friday 17 May 2013, a workshop was organised by (International Patient Organisation for Primary
More informationInternet Society STRONG Engaging for Impact
March 2017 Internet Society STRONG Engaging for Impact Board presentation Ayesha Hassan, VP Stakeholder Relations and Partnerships Internet Society 1992 2016 Vision: Bind all our supporters as Partners,
More informationNational Strategic Partner Program Guide Reach your Target Audience through the Women s Council of REALTORS National Strategic Partner Program
National Strategic Partner Program Guide Reach your Target Audience through the Women s Council of REALTORS National Strategic Partner Program Service providers wanting to reach business decision makers
More informationAbout the Modern Language Association
Strategic Plan 2016 20 Contents Since its founding in 1883, the MLA has continually recast its mission to meet new challenges and to shape the best practices for members professional lives. In this spirit,
More information2018 Strategic Planning: Improving Identification of Depression and Alcohol Use Disorders in Primary Care
2018 Strategic Planning: Improving Identification of Depression and Alcohol Use Disorders in Primary Care 3/22/18 Michelle Dattada, MSW, LCSW Technical Advisor Michelle.Dattada@alliantquality.org 1 Goal
More informationFamilY Partnerships in a National Professional Membership Society IPFCC Conference July 25, 2016
FamilY Partnerships in a National Professional Membership Society IPFCC Conference July 25, 2016 Carole Allen, MD, FAAP Betsy Anderson Julie Beckett Tamela Milan SESSION OBJECTIVES Gain knowledge about
More informationAMERICAN PROFESSIONAL SOCIETY FOR ADHD & RELATED DISORDERS Setting Direction for the Society
AMERICAN PROFESSIONAL SOCIETY FOR ADHD & RELATED DISORDERS Setting Direction for the Society August 2015 TABLE OF CONTENTS Core Ideology Core Purpose and Core Values Page 2 Envisioned Future Page 3 Goals
More informationFA EAI Intergroup Contact Response for Service Inquiries May 28,2013
FA EAI Intergroup Contact Response for Service Inquiries May 28,2013 Please send the following: 1. Cover letter (template below) 2. EAI Description (attached) 3. EAI Committee Descriptions 4. EAI Contact
More informationFrom CF Adult and Family Advisors (AFA) to Community Voice
2016 Year in Review From CF Adult and Family Advisors (AFA) to Community Voice Where we have been and where we are going Community Voice is composed of over 300 people with cystic fibrosis, parents, spouses,
More informationEngaging CAEs Best Practices
Engaging CAEs Best Practices How can I understand my chapter s CAE audience and their needs? Anonymous survey The Chicago Chapter surveys its CAE group to determine their interests, needs, wants. Also
More informationLeadingAge and Hospice Members: Partners in Providing Quality Care to Older Adults. January 2019
LeadingAge and Hospice Members: Partners in Providing Quality Care to Older Adults January 2019 Hospice is a unique service delivery model providing holistic care to individuals at the end of their lives.
More information2019 Walk4Hearing National Corporate Sponsorship Opportunities
2019 Walk4Hearing National Corporate Sponsorship Opportunities A Walk4Hearing sponsorship can extend your organization s reach to more than 10,000 participants who are leading the way to increased awareness
More informationWe are a network of successful REALTORS, advancing women as professionals and leaders in business, the industry and the communities we serve.
We are a network of successful REALTORS, advancing women as professionals and leaders in business, the industry and the communities we serve. Dear Business Professional: It is a pleasure to invite you
More informationGlobal Patient Survey. Country-Specific Report Belgium
Global Patient Survey Country-Specific Report Belgium HCV Quest Country-Specific Report ABOUT HCV QUEST The biggest barrier I have faced in the fight against viral hepatitis is... no recognition, lack
More informationRetina International General Assembly Auckland, New Zealand
Retina International General Assembly 2018 - Auckland, New Zealand Thursday, February 8th, 2018 Location: University of Auckland Business School Owen G Glenn Building, 12 Grafton Road, Auckland, 1010 Room:
More informationPeople First Three-year Strategic Plan
People First Three-year Strategic Plan 2019-2021 Goal 1. People First TN is a powerful self-advocacy organization, leading a vibrant, engaged and growing movement of self-advocates committed to the full
More informationCIT Strategic Plan. November 2015 November 2017
CIT Strategic Plan November 2015 November 2017 "Communities large and small are seeking answers to managing crisis issues and crisis services. When changes are mandated, community collaborations and partnerships
More informationGEO Service Provider Advisory Council ( Advisory Council )
GEO Service Provider Advisory Council ( Advisory Council ) Purpose Serve as an advisory body to GEO regarding service provider needs, marketplace developments, etc. Serve as a conduit for fresh ideas and
More informationStriving for a World without Myasthenia Gravis #MGStrong
Striving for a World without Myasthenia Gravis #MGStrong Do You Have Muscle Weakness What is Myasthenia Gravis (MG)? Myasthenia gravis (pronounced My-astheen-ee-a Grav-us) comes from the Greek and Latin
More informationSummary of Board Member Responsibilities
This is a professional commitment and as DMAW is a volunteer driven organization, board members must be committed to the success and growth of the organization. Serving on the board is a great opportunity
More informationApplication Pack. Endometriosis UK Trustees
Application Pack Endometriosis UK Trustees RECRUITING FOR THREE NEW TRUSTEES WITH A BACKGROUND IN: MARKETING AND COMMUNICATIONS CHARITY INCOME GENERATION AND FUNDRAISING HEALTH POLICY Contents 1. Welcome
More informationWho we are. We envision a world where high quality eye health and vision care is accessible to all people.
Who we are The World Council of Optometry (WCO) is an international optometric association founded in 1927. The WCO represents over 200,000 optometrists in more than 60 countries, through almost 300 Country,
More informationCONNECTED HEALTH TRENDS
CONNECTED HEALTH TRENDS 2018 A CONNECTED HEALTH MOVING IN THE RIGHT DIRECTION The figure 10,000 is now synonymous with the number of steps we should all be striving for each day to help maintain a healthy
More information2018 AFP INTERNATIONAL COMMITTEE DESCRIPTIONS
2018 AFP INTERNATIONAL COMMITTEE DESCRIPTIONS MEMBERSHIP SERVICES DIVISION Leadership Development and Member Engagement: Ensures AFP services to members and provides support to chapters and chapter services.
More informationCall for Strategic Partners, Sponsors and Exhibitors
Presents Call for Strategic Partners, Sponsors and Exhibitors Sunday, June 22 Tuesday, June 24, 2014 The Westin Beach Resort Fort Lauderdale, Florida www.planetphilanthropy.org Greetings from Planet Philanthropy
More informationVisit aahpm.org to learn more about these programs. We appreciate your continued support and look forward to serving you in the coming year.
AAHPM Member Guide Your guide to making the most of your membership in the only national medical specialty society for hospice and palliative medicine. Thank you for your membership in AAHPM. This Member
More informationInternational Kidney Cancer Coalition. Patient Organisations Working Together Globally to Support Those Affected by Kidney Cancer
International Kidney Cancer Coalition Patient Organisations Working Together Globally to Support Those Affected by Kidney Cancer 2 Our Global Network The IKCC (International Kidney Cancer Coalition) is
More informationSTRATEGIC APPROACH & WORKPLAN 2007
Rare Diseases Europe STRATEGIC APPROACH 2007-2009 & WORKPLAN 2007 Paris, March 2007 www.eurordis.org Contents Our strategic approach 2007 2009 o Eurordis in 2010 o Strategic orientations o Priorities 2007-2009
More informationCLL Patient Voices Survey Final Report. PHEM/DAT/0418/0008 May 2018
CLL Patient Voices Survey Final Report PHEM/DAT/0418/0008 May 2018 Table of contents OBJECTIVES, SAMPLE & METHODOLOGY FINDINGS Treatment experience Satisfaction with current treatments Treatment adherence
More informationAmerican Thyroid Association
American Thyroid Association CASE FOR SUPPORT LEADING THE WAY UNDERSTANDING, PREVENTING, DIAGNOSING, AND TREATING THYROID DISEASE 2 AMERICAN THYROID ASSOCIATION A CASE FOR SUPPORT A butterfly shaped gland
More informationChief Development Officer National Brain Tumor Society
Send Nominations or Cover Letter and Resume to: Lisa Vuona Vice President 617-262-1102 lvuona@lllsearches.com Chief Development Officer National Brain Tumor Society Newton, MA http://braintumor.org/ The
More informationAGA Lincoln Chapter Members - Centric Report Program Year
AGA Lincoln Chapter Members - Centric Report Program Year 20-2017 lincolnneaga.org The Association of Government Accountants (AGA) Founded in 1950, the AGA is the member organization for financial and
More information2017 TEAM CAPTAIN GUIDE
2017 TEAM CAPTAIN GUIDE No one on this journey should walk alone Teams are the heart of what makes RESOLVE s Walk of Hope so successful! We are so glad you are stepping up in a BIG WAY for RESOLVE! Clinics,
More informationTIME TO CHANGE Employer Pledge Action Plan
TIME TO CHANGE Employer Pledge Action Plan 1 ABOUT TIME TO CHANGE Time to Change is a growing movement of people changing how we all think and act about mental health problems. Led by the charities Mind
More informationSponsorship & Hosting Opportunities. Connect with our family enterprise community Canada s largest and most influential industry segment
2016 2017 Sponsorship & Hosting Opportunities Connect with our family enterprise community Canada s largest and most influential industry segment Join the Conversation Connect with Family Business REACH
More informationACTION. Youth Advisory Board Toolkit PACER CENTER. I. Who we are. II. PACER s Youth Advisory Board on Children s Mental Health. About PACER Center
Youth Advisory Board Toolkit Welcome to the Youth Advisory Board toolkit for PACER Center s Children s Mental Health and Emotional or Behavioral Disorders Project. We re excited that your organization
More informationMoving Beyond Cooperation: Engaging Families in Health Care Organizations and Practices Thursday, May 25, Noon Central
Back to Basics: Meaningfully and Effectively Engaging Families in Pediatric Practices and Systems A webinar series brought to you by the National Center for Medical Home Implementation, the National Center
More informationAAHPM Member Guide Your guide to making the most of your membership in the only national medical specialty society for hospice and palliative medicine
AAHPM Member Guide Your guide to making the most of your membership in the only national medical specialty society for hospice and palliative medicine NETWORK WITH YOUR PEERS Expanding your network with
More information2/28/2012. Roles for State Title V Programs in Building Systems of Care for CYSHCN- ASD & Other DD: Lessons Learned in NJ
Roles for State Title V Programs in Building Systems of Care for CYSHCN- ASD & Other DD: Lessons Learned in NJ Presented by Diana MTK Autin, Executive Co-Director, Statewide Parent Advocacy Network 35
More informationE-Newsletter Samples For The Cutaneous Lymphoma Foundation
Strategic marketing results that build your bottom line. Jen Viano Copywriter/Marketing Consultant Cell: 248.703.9297 jen@jenvianocopywriting.com www.jenvianocopywriting.com E-Newsletter Samples For The
More informationHoarding. Exhibitor, Sponsor, and Advertiser Brochure. Thursday - April 26, 2012 Friday - April 27, Westin San Francisco Airport Hotel
Collaborate Collaborate with other community partners Empower Empower yourself or others with hoarding and cluttering challenges Research Engage in discussions about new cutting edge clinical and field
More information1. Association Demographics
1. Association Demographics Please assist TESOL in maintaining records about the members of the Affiliate Network by completing this annual report no later than 31 March 2019. A PDF of this report is available
More informationAnnual Report
Annual Report 2016-2017 When you join NAMI Wake County you become a member of a group of people who truly care and provide support, education and advocacy in our community. NAMI Wake County Tel 919-848-4490
More informationHOSPITAL In The HOME SOCIETY AUSTRALASIA STATEGIC PLAN
HOSPITAL In The HOME SOCIETY AUSTRALASIA STATEGIC PLAN 2015-2018 Mission; The Hospital in the Home (HITH) Society of Australasia is the peak independent industry organisation developed by leaders in their
More informationThe following report provides details about the strategic plan and the main accomplishments from the 2015 plan.
INTRODUCTION In Fall 2014, the Denver Public Health Strategic Planning Committee worked with staff and partners to develop the 2015-2017 Strategic Plan. From this plan, the annual 2015 implementation plan
More informationSupport the Community that Supports Your Business!
Support the Community that Supports Your Business! 90% of the general public recognizes and values the United Way brand Sponsorship of United Way special events is the perfect way for your business to
More informationTalking With Each Other. Internal Communications Framework
Talking With Each Other Internal Communications Framework Approved August 9, 2017 The solutions to homelessness are as diverse as the people who experience it, and we all have a role to play in ending
More informationMental Health Association of Southwest Florida
Mental Health Association of Southwest Florida General Information Contact Information Nonprofit Primary Contact First Name Primary Contact Last Name Mental Health Association of Southwest Florida Petra
More informationMEMBER VALUE THOUGHT LEADERSHIP CERTIFICATION COLLABORATION EMPOWERMENT. Current Members * Retention Rate 92% 83% 58% New Members
AGA Lincoln Chapter Members - Centric Report Program Year 2015-20 lincolnneaga.org The Association of Government Accountants (AGA) Founded in 1950, the AGA is the member organization for financial and
More informationEPAG UPDATE. Lenja Wiehe. European Patient Advocacy Groups Manager, EURORDIS
EPAG UPDATE Lenja Wiehe European Patient Advocacy Groups Manager, EURORDIS Patient Centre & Empowerment European Reference Networks (ERNs) created on founding principles of patient-centred care, patient
More informationNew York City NEDA Walk Sunday, October 5, 2014
New York City NEDA Walk Sunday, October 5, 2014 Sponsorship Opportunities National Eating Disorders Association 165 W 46 th Street, Suite 402 New York, NY 10036 T: (212) 575-6200 F: (212) 575-1650 walks@nationaleatingdisorders.org
More informationfor being a Team Leader
EVENT TEAM LEADER DETAILSKIT THANK YOU for being a Team Leader Included in this Team Leader Kit, you will find the necessary tools to build a successful team for AIDS Walk New York. As a Team Leader, your
More information2016 Annual Report. Building An Inclusive Future We Can All Believe In
2016 Annual Report Building An Inclusive Future We Can All Believe In Overview Financial Status Program Highlights Strategic Plan Update Board Governance Mission Statement To ensure individuals with Down
More informationEuropean Patients Academy on Therapeutic Innovation
European Patients Academy on Therapeutic Innovation http://www.patientsacademy.eu info@patientsacademy.eu The project is receiving support from the Innovative Medicines Initiative Joint Undertaking under
More informationWebsite Briefing document for Multiple Sclerosis Society of Ireland.
Website Briefing document for Multiple Sclerosis Society of Ireland. Issued By: The Multiple Sclerosis Society of Ireland 80, Northumberland Rd Dublin 4 Tel: 01-678 1604 Email: thomasm@ms-society.ie Tender
More informationFriends raises funds, offers expertise, collects donations, and provides volunteer support to help:
ANNUAL REPORT 2015 1603 22 nd Street Anacortes, WA 98221 Phone: 360-293-0673 Ext. 106 FAX: 360-299-2953 Website: fidalgopool.com Friends of Fidalgo Pool and Fitness Center is a 501(c)(3) nonprofit charitable
More informationMiMentor. Conference. Health Careers. October 4th, Mentoring the next generation of healthcare professionals.
MiMentor Health Careers Conference Mentoring the next generation of healthcare professionals. East Los Angeles College October 4th, 2014 1301 Avenida Cesar Chavez, Monterey Park, CA 91754 Funded by: MiMentor
More informationWOMEN S ENERGY NETWORK NEW MEMBER PACKET
Empowering Women in Energy info@womensenergynetwork.org www.womensenergynetwork.org WOMEN S ENERGY NETWORK NEW MEMBER PACKET Dear WEN Member, On behalf of the WEN National Membership Committee, I would
More information4. Project Inform does receive restricted donations from corporations, non-profits, foundations, and government entities.
DONATION GUIDELINES As a non-profit organization, Project Inform is able to fulfill its mission and provide services, free of charge, because of its fundraising and outreach efforts. Project Inform receives
More information2 WHO 1 Who do you need to involve? a specific condition, service or treatment
PATIENT AND PUBLIC ENGAGEMENT PLANNING TEMPLATE Instructions: Patient engagement is about meaningful engagement of patients/public in the research process (not just as subjects of research). This template
More information2017 Corporate Sponsorships
TM 2017 Corporate Sponsorships Austin- Travis County Expo Center 512.361.6239 clcasebeer@alz.org 1 P age Alzheimer s disease is a global epidemic. AT LEAST 44 MILLION PEOPLE WORLDWIDE ARE LIVING WITH DEMENTIA
More informationCorporate Sponsorship Proposal
Corporate Sponsorship Proposal 2018-2019 "To engineer a better society, we need people of different genders, races, and backgrounds solving our problems." ~ Jamie Clark Table of Contents Introduction...
More informationOUR MISSION: SUPPORT, EDUCATION AND RESEARCH
OUR MISSION: SUPPORT, EDUCATION AND RESEARCH LISA S STORY Lisa Hendricks was just seven years old when her parents noticed she was limping and couldn t lay her hands flat on a table. She hadn t complained
More informationPeer Networks 101. The Role of a Statewide Network 07/31/2018. Cameron Wood, CRPS-A Executive Director Peer Support Coalition of Florida, Inc.
Peer Networks 101 The Role of a Statewide Network 07/31/2018 Cameron Wood, CRPS-A Executive Director Peer Support Coalition of Florida, Inc. A COUPLE THINGS BEFORE WE BEGIN If you have any questions during
More informationAssociate Board Description Sheet
The Night Ministry (TNM) is a Chicago-based organization that works to provide housing, health care and human connection to members of our community struggling with poverty or homelessness. The Night Ministry
More informationTALKING POINTS FOR COLE SOCIETY PRESENTATION
TALKING POINTS FOR COLE SOCIETY PRESENTATION History of Johnnetta B. Cole Society who she was, how it came to be Our mission is to engage and bring together people and resources to drive sustainable improvements
More informationChild Neurology Foundation
Child Neurology Foundation Creating a Community of Support 2017-2021 Strategic Plan Page 1 Our Mission How We ll Get There To serve as a collaborative center of education and support for children and families
More informationAddressing Gaps in MS Care. November 6, :00 AM - Noon
Addressing Gaps in MS Care November 6, 2015 11:00 AM - Noon Learning Objectives Understand and confidently communicate the barriers to MS care caused by the shortage of healthcare providers with MS experience,
More informationU.S. Fund for UNICEF Campus Initiative LEADERSHIP TRANSITION HANDBOOK
U.S. Fund for UNICEF Campus Initiative LEADERSHIP TRANSITION HANDBOOK Table of Contents Introduction and Club Organization 1 Transition Guidelines 3 Sample Outgoing Officer Questionnaire 5 Sample Position
More informationYouth Advocacy Day Kristen Nuyen, Coordinator, Child & Adolescent Health Initiative
Youth Advocacy Day 2018 Kristen Nuyen, Coordinator, Child & Adolescent Health Initiative VISION EverThrive Illinois envisions an Illinois that works towards equity and social justice, fosters the development
More information2013 National Treatment Survey. Immune Deficiency Foundation
2013 National Treatment Survey Immune Deficiency Foundation IDF 2013 Treatment Survey Mail-based, pencil & paper survey Over 75 Main questions Survey in the field December 2013-March 2014 IDF mail invitation
More information2010 March of Dimes Foundation
- 2010 March of Dimes Foundation Welcome to March for Babies 2011! We re so glad you decided to join us as we walk together for stronger, healthier babies. March for Babies is America s favorite walking
More informationA Comprehensive Guide for 2014 SPONSORSHIP & UNDERWRITING Programs and Services
A Comprehensive Guide for 2014 SPONSORSHIP & UNDERWRITING Programs and Services Sponsorship and Underwriting Programs and Services Mission to Care. Vision to Lead. There is no organization better positioned
More informationAgenda. Illinois Diabetes Action Plan: What s In It for You? 10/27/2017
Illinois Diabetes Action Plan: What s In It for You? AADE IL Coordinating Body 4th Annual Symposium Making Noise About Diabetes Bloomington, IL November 3, 2017 Agenda The Burden of Diabetes IL Diabetes
More informationASSOCIATION OF FUNDRAISING PROFESSIONALS MASSACHUSETTS CHAPTER SPONSORSHIP OPPORTUNITIES
ASSOCIATION OF FUNDRAISING PROFESSIONALS MASSACHUSETTS CHAPTER SPONSORSHIP OPPORTUNITIES 2017-18 Why become a sponsor of AFP MA Chapter? Increase your organization s recognition and build relationships
More informationWHAT IS THE DECISION MAKING PROCESS?
5841 Cedar Lake Road, Suite 204 Minneapolis, MN 55416 USA Tel: 952.646.2029 Fax: 952.545.6073 www.humanbrainmapping.org GUIDE AND GUIDE AGREEMENT TO SUBMITTING TO SUBMITTING A A LETTER BID OF INTEREST
More information2016 NYC Hep B Coalition Work Plan
The NYC Hepatitis B Coalition mission is to coordinate efforts to prevent, manage and reduce hepatitis B among all residents of New York City. The coalition seeks to foster an inclusive collaboration among
More informationWe Are One Empowering Women for Generations
We Are One Empowering Women for Generations Annual Meeting & Leadership Conference April 18 20, 2018 Long Beach Convention Center SPONSORSHIP OPPORTUNITIES Support of the nation s largest multi-generational
More informationBUSINESS PARTNERSHIP PROGRAM
2019 2020 BUSINESS PARTNERSHIP PROGRAM Connect your company to the American national theatre community. Help TCG make a better world for theatre and a better world because of theatre. TCG BUSINESS PARTNERSHIP
More informationThe Journey towards Total Wellbeing A Health System s Innovative Approach
The Journey towards Total Wellbeing A Health System s Innovative Approach Company Profile Wellness A state of complete physical, mental and social wellbeing and not merely the absence of disease or infirmity
More informationSPONSORSHIP OPPORTUNITIES
SPONSORSHIP OPPORTUNITIES 2014 ANNUAL REPORT Contact: Ilene Goldberg, Manager, Membership and CoP Relations (703) 387-3049 igoldberg@leanconstruction.org SUMMARY IN 2014 the Lean Construction Institute
More informationAssociation for Change Management Professionals Manitoba Chapter Annual Report. Metamorphosis: Growing Our Wings
Association for Change Management Professionals Manitoba Chapter 2016 Annual Report Metamorphosis: Growing Our Wings Table of Contents About the Association for Change Management Professionals (ACMP) Manitoba
More informationGuideStar Impact Call
GuideStar Impact Call F o u r t h Q u a r t e r R e s u l t s R e p o r t i n g February 14, 2018 2018 #GSImpactCall Please suggest questions throughout the conversation Today s webinar will be recorded.
More informationPeer Work Leadership Statement of Intent
Peer Work Leadership Statement of Intent A National Professional Association for Mental Health Peer Workers Peer work leaders from Queensland, Victoria and NSW and colleagues from the USA participated
More informationPARTNERSHIP & SPONSORSHIP OPPORTUNITIES
PARTNERSHIP & SPONSORSHIP OPPORTUNITIES About MPI Meeting Professionals International (MPI) is the largest meeting and event industry association worldwide. Founded in 1972, the organization provides innovative
More informationANNUAL REPORT 2014 FINDING CONNECTIONS FINDING A CURE
ANNUAL REPORT 2014 FINDING CONNECTIONS FINDING A CURE FEBRUARY 1, 2013 TO JANUARY 31, 2014 MESSAGE FROM OUR LEADERSHIP For all of us, motor neurons, and the connections they make between the brain and
More informationHow Fintech & Matched Savings Can Help Your Clients & Your Program: Introducing EARN s SaverLife Platform. November 15, 2017
How Fintech & Matched Savings Can Help Your Clients & Your Program: Introducing EARN s SaverLife Platform November 15, 2017 Welcome Carmen Shorter Senior Manager for Learning, Field Engagement Prosperity
More information