Welcome and IDF Update July 20, John G. Boyle President & CEO
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1 Cleveland, OH
2 Welcome and IDF Update July 20, 2018 John G. Boyle President & CEO
3 This Evening s Topics About IDF What to Expect This Weekend How We Can Help You (Education & Support) What We Do (Advocacy & Research) How You Can Get Involved
4 About IDF Dedicated to improving the diagnosis, treatment and quality of life of persons with primary immunodeficiency diseases. Founded in 1980, 10 diagnoses, 1 volunteer founder and a handful of families Today, 350+ diagnoses, 30+ staff members, and over 250,000 diagnosed
5 THINK ZEBRA!
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8 What to Expect This Weekend IDF Retreat
9 Learn from Experts in the Field Presenters Nicholas Hartog, MD, Spectrum Health Medical Group Rebecca Marsh, MD, Cincinnati Children s Hospital Medical Center Nancy I. Joseph, DO, Allergy/Immunology Associates, Inc. Rebecca Scherzer, MD, Nationwide Children s Hospital Jodi Taub, LCSW, LLC, Private Practice, NYC Nancy Wasserbauer, DO, University Hospitals M. Elizabeth Younger, CPNP, PhD, Johns Hopkins University School of Medicine Interactive Q&A Learn and take this knowledge back to your physician
10 Connect with Others Networking sessions Adults with PI, ages 50+ Adult with PI, ages Young adult with PI, ages Parent of a child or teen with PI Spouse/partner Youth programs, for children 6 months to 18 years Panel featuring people affected by PI sharing their stories Share your story with IDF Reel Stories
11 Visit, Learn, & Win Learn about the products and services available to you. Each day, stop by and talk with our sponsors and exhibitors.
12 Discover IDF Education Resources Support Research Public policy Volunteer opportunities
13 How We Can Help You Education & Support
14 Top Reasons People Contact IDF Locating an immunologist in their area Diagnosis and treatment questions General education about PI Health insurance issues Peer support Volunteering
15 PI Community Services Need to talk? Ask IDF Get Connected Groups IDF Peer Support IDF Friends IDF provides a range of programs to support people living with primary immune deficiency (PI), their families, friends, and caregivers.
16 Educational Programs and Resources IDF Website IDF Publications Education Meetings & Family Conference Days Teen Escapes National Conference Connect & Learn: Face-to-Face and Online IDF develops critical resources and programming that offer valuable information about treatment, management, and coping skills.
17 Save the Date! 2019 IDF 2019 National Conference June 20-22, 2019 Gaylord National Resort National Harbor, MD
18 Online Interaction and Education
19 What We Do Advocacy & Research
20 IDF Public Policy IDF believes that healthcare professionals, in consultation with their patients, should make decisions about care and changes in treatment. Whether through private insurers or public payers (Medicare and Medicaid), IDF advocates for access to: o Affordable care o Appropriate medical specialists o All treatments and products in all sites of care o Newborn screening for SCID throughout the U.S. Help individuals with PI receive lifesaving care
21 47 States Currently Screening for SCID 93% of all newborns in the U.S. are receiving SCID screening
22 Diagnosing and Treating SCID
23 Advancing Research Better Information for Better Outcomes IDF Survey Research More than 40 surveys of patients and medical professionals since 1995 Used to advocate with the government regarding legislative issues in the PI community Cited and used by medical professionals, government and industry IDF Research Grants Filling a critical need with seed grants for PI Four grants awarded in 2018 IDF provides unique data that steers the conversation about PI
24 Clinical Trials for PI What you need to know when considering clinical trials Information on different types of research and studies A video on what you should consider before participating Once you understand what you should know, see what is available for your particular disease type, go to:
25 Allows people with PI to transform how they manage their health Tracks symptoms, Ig infusions, medications, log health information Access it via computers, tablets, phones ephr app Ability to consent into PI CONNECT and take part in research!
26 USIDNET Patient Registry Patient consented registry of individuals with PI Important resource for physicians to collect clinical and laboratory data Experiences with PI advance vital research Currently, over 6,300 patients
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28 Joins information entered in your IDF ephr with the USIDNET patientconsented registry Bringing this information together through PI CONNECT gives researchers valuable insight into the patient experience Information is safe, secure & deidentified
29 How You Can Get Involved Sign Up, Walk with Us, Volunteer & More!
30 We Need You!
31 Update Your My Account
32 Sign Up for IDF Local Action Efforts, Nationwide AlertsImpact Make your voice heard for the herd You sign up to receive notification of action alerts. When we need your voice heard regarding public policy issues, we will you with the information you need to make a difference. Easy to forward to friends and family.
33 Help Advance Research IDF PI CONNECT is advancing research! Funded through Patient-Centered Outcomes Research Institute (PCORI)
34 Participate in IDF Surveys 50% 40% 30% 20% 10% 0% Excellent Very good Good Fair Poor Very Poor Blank
35 IDF Join the IDF Volunteer Network Health Access Advocates IDF Liaisons Plasma Awareness Coordinators IDF Get Connected Leaders Peer Support Coaches
36 IDF Walk for Primary Immunodeficiency 2018 National Walks Atlanta: 10/27 Boston: 9/30 Chicago: 9/30 Cleveland: 9/23 Dallas: 11/10 Ft. Lauderdale: 11/17 Kansas City: 10/27 Los Angeles: 11/4 New York City: 10/21 Philadelphia: 10/14 St. Louis: 10/13 Tampa: 11/17
37 Help Us Reach More People
38 Final Thoughts Find out how IDF can help you Learn how you can help the PI community Learn from everyone you meet this weekend Be your own best advocate
39 Follow IDF on Social Media IDF Friends Facebook LinkedIn #IDFretreats
40 Thank You, Presenters! Thank You! Nancy I. Joseph, DO Allergy/Immunology Associates, Inc. Nicholas Hartog, MD Spectrum Health Medical Group Rebecca Marsh, MD Cincinnati Children s Hospital Medical Center Jodi Taub, LCSW, LLC Private Practice, NYC Nancy Wasserbauer, DO University Hospitals Westshore Primary Care M. Elizabeth Younger, CPNP, PhD Johns Hopkins University School of Medicine Rebecca Scherzer, MD Nationwide Children s Hospital
41 Thank You! Retreat Sponsors CSL Behring Grifols Shire Horizon Pharma Octapharma Leadiant Biosciences Retreat Scholarships Enzyvant Horizon Pharma Retreat Exhibitors Accredo Healthcare CVS Specialty / Coram CVS Specialty Infusion Services Diplomat Kroger Specialty Infusion
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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 &
Immune Deficiency Foundation. Dedicated to Improving the Diagnosis, Treatment and Quality of Life of Persons with Primary Immunodeficiency Diseases
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