12.8%Increase from

2015

Leading the Way in EDUCATION, ADVOCACY & RESEARCH OF PI

BUILDING A Strong Community One Step at a Time

REQUESTS for Support and Information

NEW IDF Patient & Caregivers

· Locating a Specialist· Education· Health Insurance

TOP THREE REQUESTS

290,000+Education Materialsdistributed at no cost to patients & familiesNEW - 13 eBooks available for download

50 New videos created in 2016 IDF videos have been reviewed more than

233 Education Presentations

128 Cities

34 States

2 Countries

INDIVIDUALS RECEIVED Newsletters:

PRIMARYIMMUNE TRIBUNE

NEWSLETTERIDF ADVOCATE

ParticipantsVolunteers

TeamsCities

RECORD BREAKING

300+400 14

TIMES

15,429 ATTENDEES

4,000

7,883

1,692

INTE

RNAT

IONAL OUTREACH • Collaborate with IPOPI

• Participate in World PI Week, April 22-29

• Launched New International Section of Website

• A Zebra Tale from the Immune Deficiency in Spanish

• IDF ePHR in Spanish

EXPANDING OUR IMPACT through Life Changing Educational Programs

56 cities in 28 States

Salt Lake City, UTAttendees

States Represented

First-time Attendees at an IDF event

Volunteers registered in the

NEWIDF Volunteer

Connection Center

Enhancing Our Volunteer Network

IDF OUTREACH INITIATIVE

IDF Get Connected Groups met in 2016, 4-6 times on average in 16 different States

CGD Website: www.LivingwithCGD.org

The IDF Zebra

The IDF Zebra

The IDF Zebra

The IDF Zebra

324 Followers

365 Followers

Boston (Newton), MAAttendees (largest ever)

States Represented

First-time Attendees at an IDF event

2 IDF RETREATS

293 26

41%

182 24

25%Northbrook, IL

Attendees

2 TEEN ESCAPES

98Charlotte, NC

Attendees71

Education Meetings

Attendees

Healthcare Providers Volunteered to Present

27 1,764

114

Hosted 2 special sessions for young adults with PI

LIVE YOUNG ADULT WEBINARS

5

5,460 Members

300 40Liasons Recruited 21in States

29 Get Connected leaders former

306 Members

FRIENDS:COMMON GROUND:

IDF SOCIAL NETWORKS:

IDF SOCIAL MEDIA:FACEBOOK: 5,461 Likes

TWITTER: 2,128 Followers

INSTAGRAM: 2,128 Followers

• 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

INTE

RNAT

IONAL OUTREACH

THE VOICE OF THE PI COMMUNITY

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 first training

Health Access Advocates Program: New program to recruit points of contact in each state to enhance access and remove barriers to care –

volunteer advocates

12

22

the community in today’s world

EMPOWERING

• 4-Star Rating from Charity Navigator

• Website Usability Study• IDF Portal – Beginning Stages• Hired 4 New Staff Members

75

3,000

130patients/family members

legislative meetings

4 calls to actions were sent to our community, generating approximately

letters and calls to policymakers

IDF ePHR & IDF PI CONNECT3,068 IDF ePHR health records

1,916 IDF PI CONNECT participants

USIDNET6,162 registered

2,250 patients and healthcare professionals participated in

5 IDF surveys: treatment, health insurance, mental health, and more

INNOVAT ING THROUGH

PATIENT-POWERED RESEARCH

COLLABORATING WITH OTHER ORGANIZATIONS

Inspired thousands to participateAwareness Month & World PI Week

• Partnered with CIS for Awareness Month & World PI Week

• AAAAI• A-PLUS• CIS• IPOPI

• PPTA• NHC• PBSA

IDF Guidefor NursesImmunoglobulin Therapy for

Primary ImmunodeficiencyDiseases

Fourth Edition

2016 Guide for Nurses_Layout 1 10/4/16 10:36 AM Page C1

• Medical Center Partners

• Plasma Partner Program

• Consulting Immunologist Program: 2016-140

• IDF Guide for Nurses Immunoglobulin Therapy for Primary Immunodeficiency Diseases – Fourth Edition

IDF MAC & NAC

of all babies born

FIGHTING TO

Save Lives

890%

New states began newborn screening

are now being screened for SCID in U.S.

States are currently screening for SCID43

As of January 2017:

1st Grant Awarded for PI Research

IDF RESEARCH GRANT

2016 REVENUE

70.03% 2464503.0%

6.41%

14.71%

2.99%

5.41%

0.45%

100.00%

*This includes contributions for our programs, patient education and events from pharmaceutical, biotechnology and medical device companies.

25.18%

53.84%

10.49%

10.50%

100.00%

70.03%

6.41%

14.71%

2.99%

5.41%

0.45%

Revenue

*This includes contribu?ons for our programs, pa?ent educa?on and events from pharmaceu?cal, biotechnology and medical device companies.

25.18%

53.84%

10.49%

10.50%

Expense

Medical and Scien?fic

Services to Pa?ents and Families

Administra?on and Finance

Marke?ng and Fundraising

Industry* Contributions and Grants (includes walk funding)

Contributions - Individuals

Government Grants and Contract Revenue

Investment Income

Special Events - Walks - Individuals (industry reflected above)

Special Events - Other

2464503.0%

*This includes contributions for our programs, patient education and events from pharmaceutical, biotechnology and medical device companies.

Revenue

2464503.0%

*This includes contributions for our programs, patient education and events from pharmaceutical, biotechnology and medical device companies.

Medical and Scientific

Services to Patients and Families

Administration and Finance

Marketing and Fundraising

2464503.0%

*This includes contributions for our programs, patient education and events from pharmaceutical, biotechnology and medical device companies.Expenses

*This includes contributions for our programs, patient education and events from pharmaceutical, biotechnology and medical device companies.

STATEMENT OF ACTIVITIES & CHANGES in Net Assets for the Year Ending December 3, 2016

Temporarily PermanentlyUnrestricted Restricted Restricted Total

PUBLIC SUPPORT AND REVENUE:Public support:

Contributions and grants 4,301,474$ 1,769,404$ $ - 0 - 6,070,878$ Net assets released from restrictions 1,375,566 (1,375,566) - 0 - - 0 -

Total public support 5,677,040 393,838 - 0 - 6,070,878

Government grants and other contract revenue 1,204,053 - 0 - - 0 - 1,204,053

Revenue:Investment income 244,991 - 0 - - 0 - 244,991 Other income 60,730 - 0 - - 0 - 60,730 Special events 603,301 - 0 - - 0 - 603,301

Total revenue 909,022 - 0 - - 0 - 909,022

Total Public Support and Revenue 7,790,115 393,838 - 0 - 8,183,953

EXPENSES:Program services:

Medical and scientific 1,838,427 - 0 - - 0 - 1,838,427 Services to patients and families 3,931,214 - 0 - - 0 - 3,931,214

5,769,641 - 0 - - 0 - 5,769,641

Supporting services:Administration and finance 765,611 - 0 - - 0 - 765,611 Marketing and fundraising 766,301 - 0 - - 0 - 766,301

1,531,912 - 0 - - 0 - 1,531,912

Total Expenses 7,301,553 - 0 - - 0 - 7,301,553

CHANGE IN NET ASSETS 488,562 393,838 - 0 - 882,400

NET ASSETS, BEGINNING OF YEAR 6,756,379 1,421,216 - 0 - 8,177,595

NET ASSETS, END OF YEAR 7,244,941$ 1,815,054$ $ - 0 - 9,059,995$

IMMUNE DEFICIENCY FOUNDATION AND SUBSIDIARY

Statement of Activities and Changes in Net AssetsFor the Year Ended December 31, 2016

See accompanying notes to financial statements

- 4 -

STATEMENT OF FUNCTIONAL EXPENSES for the Year Ending December 3, 2016

Medical Services to Administration Marketingand 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 66,001 130,807 196,808 56,726 29,678 86,404 283,212Payroll taxes, etc. 45,527 109,899 155,426 25,568 23,938 49,506 204,932

684,150 1,642,690 2,326,840 466,737 347,027 813,764 3,140,604

Professional fees 734,455 794,562 1,529,017 117,282 70,142 187,424 1,716,441Training, conference, conventions, & meetings 82,253 475,492 557,745 782 156,927 157,709 715,454Travel 94,694 292,904 387,598 3,512 31,813 35,325 422,923Awards and grants 77,706 42,243 119,949 10,000 - 0 - 10,000 129,949Occupancy 55,524 111,399 166,923 82,249 22,486 104,735 271,658Insurance 10,633 9,233 19,866 6,881 2,483 9,364 29,230Printing and publications 17,354 168,369 185,723 7,799 22,460 30,259 215,982Telephone 13,558 28,201 41,759 16,628 5,046 21,674 63,433Postage and shipping 8,487 110,270 118,757 6,834 37,933 44,767 163,524Supplies 20,894 37,578 58,472 16,908 9,233 26,141 84,613Rental and maintenance of equipment 12,303 45,593 57,896 14,384 4,400 18,784 76,680Miscellaneous - 0 - - 0 - - 0 - 1,550 7,481 9,031 9,031Advertising 7,203 135,138 142,341 - 0 - 24,480 24,480 166,821Dues and subscriptions 9,376 17,806 27,182 6,081 20,406 26,487 53,669

1,828,590 3,911,478 5,740,068 757,627 762,317 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$

IMMUNE DEFICIENCY FOUNDATION

Statement of Functional ExpensesFor the Year Ended December 31, 2016

PROGRAM SERVICES SUPPORTING SERVICES

See accompanying notes to financial statements

- 6 -

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 2015. 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 21204 | 800-296-4433 | www.primaryimmune.org | idf@primaryimmune.org