233 Education 290,000+ EDUCATION, ADVOCACY & RESEARCH OF PI. Presentations. Education Materials 15,429 ATTENDEES. Newsletters: Leading the Way in

Transcription

1 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 & Caregivers 12.8% Increase from 2015 TOP THREE REQUESTS Locating a Specialist Education Health Insurance 290,000+ Education Materials distributed at no cost to patients & families NEW - 13 ebooks available for download INDIVIDUALS RECEIVED Newsletters: PRIMARY IMMUNE TRIBUNE NEWSLETTER IDF ADVOCATE 50 New videos created in 2016 IDF videos have been reviewed more than TIMES RECORD BREAKING 4, Participants Volunteers Teams Cities BUILDING A Strong Community One Step at a Time

2 2 IDF RETREATS % % Salt Lake City, UT Attendees States Represented First-time Attendees at an IDF event Volunteers registered in the NEW IDF Volunteer Connection Center Boston (Newton), MA Attendees (largest ever) States Represented First-time Attendees at an IDF event Hosted 2 special sessions for young adults with PI Enhancing Our Volunteer Network EXPANDING OUR IMPACT through Life Changing Educational Programs 5 IDF OUTREACH INITIATIVE IDF Get Connected Groups met in 2016, 4-6 times on average in 16 different States 56 cities in 28 States LIVE YOUNG ADULT WEBINARS in Liasons Recruited States 29Get Connected leaders former 27 1, TEEN ESCAPES Northbrook, IL 98 Attendees Education Meetings Attendees Healthcare Providers Volunteered to Present Charlotte, NC 71 Attendees CGD Website: IDF SOCIAL NETWORKS: IDF SOCIAL MEDIA: FACEBOOK: 5,461 Likes TWITTER: 2,128 Followers INSTAGRAM: 2,128 Followers FRIENDS: COMMON GROUND: 5,460 Members 306 Members The IDF Zebra 324 Followers 365 Followers INTERNATIONAL OUTREACH Collaborate with IPOPI Participate in World PI Week, April Launched New International Section of Website A Zebra Tale from the Immune Deficiency in Spanish IDF ephr in Spanish

3 THE VOICE OF THE PI COMMUNITY EMPOWERING the community in today s world Stand Up for PI: New program to recruit advocates to represent IDF at the national and state level by articulating our story young adults participated in 12first training Health Access Advocates Program: New program to recruit points of contact in each state to enhance access and remove barriers to care 22 volunteer advocates INNOVAT ING THROUGH PATIENT- POWERED RESEARCH Actively engaged in monitoring the impact of potential changes to ACA Advocated for language about SCIG costs in the 21st Century Cures Act Addressed high coinsurance by creating a coalition of patient groups in Nevada Awareness Month & World PI Week Inspired thousands to participate COLLABORATING WITH OTHER ORGANIZATIONS Partnered with CIS for Awareness Month & World PI Week AAAAI A-PLUS CIS IPOPI IDF ephr & IDF PI CONNECT 3,068 IDF ephr health records 1,916 IDF PI CONNECT participants USIDNET 6,162 registered 2,250 patients and healthcare professionals participated in 5 IDF surveys: treatment, health insurance, mental health, and more IDF RESEARCH GRANT 1st Grant Awarded for PI Research FIGHTING TO Save Lives 8 New states began newborn screening As of January 2017: 90% of all babies born are now being screened for SCID in U.S. States are currently 43screening for SCID PPTA NHC PBSA patients/family members legislative meetings 4 calls to actions were sent to our community, generating approximately 3,000 letters and calls to policymakers 4-Star Rating from Charity Navigator Website Usability Study IDF Portal Beginning Stages Hired 4 New Staff Members IDF MAC & NAC Medical Center Partners Plasma Partner Program Consulting Immunologist Program: IDF Guide for Nurses Immunoglobulin Therapy for Primary Immunodeficiency Diseases Fourth Edition IDF Guide for Nurses Immunoglobulin Therapy for Primary Immunodeficiency Diseases Fourth Edition

4 2016 REVENUE 2.99% 0.45% Revenue 5.41% Industry* Contributions and Grants (includes walk funding) Contributions - Individuals 6.41% 14.71% Government Grants and Contract Revenue Investment Income Special Events - Walks - Individuals (industry reflected above) 70.03% Special Events - Other *This includes contributions for our programs, patient education and events from pharmaceutical, biotechnology and medical device companies. Expenses Medical and Scientific Services to Patients and Families Administration and Finance Marketing and Fundraising

5 STATEMENT OF ACTIVITIES & CHANGES in Net Assets for the Year Ending December 3, 2016 PUBLIC SUPPORT AND REVENUE: Public support: Contributions and grants 4,301,474 Temporarily Permanently Unrestricted Restricted Restricted Total $ $ 1,769,404 $ $ 6,070,878 Net assets released from restrictions 1,375,566 (1,375,566) Total public support 5,677, , ,070,878 Government grants and other contract revenue 1,204, ,204,053 Revenue: Investment income 244, ,991 Other income 60, ,730 Special events 603, ,301 Total revenue 909, ,022 Total Public Support and Revenue 7,790, , ,183,953 EXPENSES: Program services: Medical and scientific 1,838, ,838,427 Services to patients and families 3,931, ,931,214 5,769, ,769,641 Supporting services: Administration and finance 765, ,611 Marketing and fundraising 766, ,301 1,531, ,531,912 Total Expenses 7,301, ,301,553 CHANGE IN NET ASSETS 488, , ,400 NET ASSETS, BEGINNING OF YEAR 6,756,379 1,421, ,177,595 NET ASSETS, END OF YEAR $ 7,244,941 $ 1,815,054 $ $ 9,059,995

6 STATEMENT OF FUNCTIONAL EXPENSES for the Year Ending December 3, 2016 PROGRAM SERVICES SUPPORTING SERVICES Medical Services to Administration Marketing and Patients and and Grand Scientific and Families Total Finance Fundraising Total Total Salaries $ 572,622 $ 1,401,984 $ 1,974,606 $ 384,443 $ 293,411 $ 677,854 $ 2,652,460 Employee benefits 66, , ,808 56,726 29,678 86, ,212 Payroll taxes, etc. 45, , ,426 25,568 23,938 49, , ,150 1,642,690 2,326, , , ,764 3,140,604 Professional fees 734, ,562 1,529, ,282 70, ,424 1,716,441 Training, conference, conventions, & meeting 82, , , , , ,454 Travel 94, , ,598 3,512 31,813 35, ,923 Awards and grants 77,706 42, ,949 10, , ,949 Occupancy 55, , ,923 82,249 22, , ,658 Insurance 10,633 9,233 19,866 6,881 2,483 9,364 29,230 Printing and publications 17, , ,723 7,799 22,460 30, ,982 Telephone 13,558 28,201 41,759 16,628 5,046 21,674 63,433 Postage and shipping 8, , ,757 6,834 37,933 44, ,524 Supplies 20,894 37,578 58,472 16,908 9,233 26,141 84,613 Rental and maintenance of equipment 12,303 45,593 57,896 14,384 4,400 18,784 76,680 Miscellaneous ,550 7,481 9,031 9,031 Advertising 7, , , ,480 24, ,821 Dues and subscriptions 9,376 17,806 27,182 6,081 20,406 26,487 53,669 1,828,590 3,911,478 5,740, , ,317 1,519,944 7,260,012 Depreciation and amortization 9,837 19,736 29,573 7,984 3,984 11,968 41,541 $ 1,838,427 $ 3,931,214 $ 5,769,641 $ 765,611 $ 766,301 $ 1,531,912 $ 7,301,553

7 As we look back on 2016, it is helpful to review the statistics behind our initiatives as we plan for the year ahead. With each project, we are affirming our mission to be the national organization dedicated to improving the diagnosis, treatment and quality of life of persons with primary immunodeficiency diseases. In 2016: Nearly 15,429 patients and healthcare professionals attended more than 233 IDF educational presentations in 128 cities in 34 states and 2 countries. IDF exhibited at 4 medical conferences as well as sponsored 4 LeBien Visiting Professor Programs as part of our medical outreach. 140 physicians utilized our Consulting Immunologist program and our online education course on Ig therapy for nurses issued its 1,126th certificate for this free, 5 credit course. IDF ephr, our electronic personal health record specifically developed for individuals and families living with PI, now has 3,068 health records. IDF PI CONNECT, the IDF Patient- Powered Research Network, grew tremendously with 1,916 consented participants. Our network of volunteers created awareness by distributing thousands of educational materials and spoke to approximately 2,827 people during 86 visits to plasma centers. IDF Peer Support volunteers offered one-to-one encouragement to 236 individuals. Over 4,000 walkers from 438 teams in 14 cities helped raise more than $440,000 for IDF Walk for Primary Immunodeficiency and when sponsor funds are included, more than 1.1 million was raised. National walks were held in Atlanta, Boston, Charlotte, Chicago, Cleveland, Fort Lauderdale, Houston, Los Angeles, Minneapolis, New York City, Philadelphia, St. Louis and the Nationwide Virtual Walk. 2 community walks were held in Blountville, TN and Omaha, NE. IDF Advocacy Day on Capitol Hill resulted in approximately 75 patients, family members and stakeholders meeting with over 130 members of Congress. 4 calls to actions were sent to our community, generating approximately 3,000 letters and calls to policymakers. The IDF SCID Newborn Screening Campaign saw 8 more states begin screening and as of January 2017, 43 states are screening for SCID. IDF s patient advocacy services helped fulfill over 7,883 requests from patients and families seeking education, information and assistance. IDF national patient surveys provide crucial insight into the personal impact of PI, and in 2016, more than 2,247 people and healthcare professionals participated in 5 IDF surveys. The IDF newsletter, published three times a year has a circulation of over 32,000. The monthly e-newsletter, is sent to more than 32,000. Our website boasts a 12.8% increase in visits over Our social networking sites, IDF Friends and IDF Common Ground, continue to grow with nearly 5,000 members. Add to that, 2 active blogs and the IDF Video hub for all our videos, watched more than 306,694 times. More than 290,000 IDF educational materials were distributed to members of the PI community. The United States Immunodeficiency Network (USIDNET), a program of IDF, is a network of leading immunologists who have joined together to advance knowledge in the field of PI. A key component is the patient-consented registry, which surpassed the 6,162 registration mark. Adding it all up 2016 was a monumental year! Join us in 2017 and help IDF continue to provide the services, education, information and advocacy that our community needs and so richly deserves. 110 West Road Suite 300 Towson, Maryland idf@primaryimmune.org