Primary Immune Tribune
November 2013
IDF Meets National Health Council Standards of Excellence

The Board of Trustees of the Immune Deficiency Foundation (IDF) is pleased to announce that the Foundation has met all of the requirements of the National Health Council (NHC) Standards of Excellence Certification Program®. The standards cover the areas of governance, human resources, programs, fundraising, finance, accounting, reporting and evaluation.

The National Health Council is made up of approximately 100 national health-related organizations and businesses. As a member, IDF will be able to work with other patient organizations and healthcare industry partners to bring attention to the needs of those living with rare and chronic diseases.

Now Accepting 2014 Requests for IDF & USIDNET LeBien Visiting Professor Program

To help improve the diagnosis and treatment of primary immunodeficiency diseases, IDF invites teaching hospitals to take advantage of a free educational program—The IDF & USIDNET LeBien Visiting Professor Program. This popular program provides teaching hospitals throughout the U.S. a leading clinical immunologist to conduct Grand Rounds and present at other educational activities, such as bedside rounds, house staff presentations and medical resident conferences.

Requests for The IDF & USIDNET LeBien Visiting Professor Program for academic year 2013-2014 are now being accepted. Simply write a brief (one page) Letter of Request stating your reason to participate in the program and how your students would benefit. Please include a tentative list of teaching and clinical activities. Submit this information to by January 17, 2014. Call 410-321-6647 should you have any questions.

New Video on SCID Newborn Screening
Visit the IDF Advocacy Channel

Annalou was the first baby to be diagnosed with Severe Combined Immune Deficiency (SCID) as a result of newborn screening in California. She is now a healthy two-and-a-half-year-old little girl bringing joy to her family, thanks to early diagnosis and treatment. CLICK HERE to watch Annalou’s family tell their heartwarming story on the IDF Advocacy Channel.

When you visit the Channel, be sure to browse through the other videos, which are divided by advocacy campaign issue, and see how IDF is using the powerful messages and stories of our patients to impact policy decisions.

“eHealth Yourself” Challenge
Help Us Get 100 New IDF eHealthRecord Users!

We have 72 new IDF eHealthRecord users, and we need your help to get to 100! IDF is challenging the primary immunodeficiency community to “eHealth Yourself” and create an account with the IDF eHealthRecord. You can enter to win a $100 American Express Gift Card!

“eHealth Yourself” and take control of your healthcare with the IDF eHealthRecord,, the online personal health record designed specifically for the primary immunodeficiency community. It recently underwent a redesign to make more user-friendly.

CLICK HERE to learn more

IDF Health Insurance Toolkit
Download Today
Regardless of how you and your family obtain your health insurance plan, it is ultimately your responsibility to choose the plan that is right for you. It is essential to understand your family’s healthcare needs and the medical services used most often to properly evaluate your plan options. The selection of an appropriate health plan can affect both your health and your finances.
IDF is proud to offer a health insurance toolkit to provide you with information, facts, resources and worksheets to help you choose the best possible options for you and your family. This toolkit reflects rules and protections already in place under the Affordable Care Act (ACA) and those that take effect in 2014. CLICK HERE to download each section individually or download the entire kit.

Help IDF While you Shop at Amazon.Com
You shop. Amazon gives.

Do you plan to do any holiday shopping through If so, then please sign up for Amazon Smile!

If you login to Amazon via, you’ll be able to select IDF as the charity you’d like to support. From that point on, whenever you shop while on the Smile site, Amazon will donate 0.5% of what you paid to IDF! For more information please visit:

4th National Treatment Survey: 2013
Be a Part of It!

To obtain a current picture of patients with antibody deficiencies who require Ig replacement therapy and their experiences in the U.S., IDF is conducting the fourth National Treatment Experiences and Preferences Survey of Patients with Primary Immunodeficiency Diseases (PI) this winter.

The only national estimates of the experiences of patients with PI are from the three IDF National Treatment Surveys conducted in 1997, 2003 and again in 2008. It is time to do it again!

This survey will:
• Demonstrate the importance of early diagnosis and proper treatment with immunoglobulin for patients with PI
• Describe in detail the health status of patients with PI
• Provide detailed data on patient reactions to various immunoglobulin treatment regimens
• Identify problems in access to treatment in this population

There will be a sample of patients contacted. We need to make sure we can get in touch with you because your input and participation is vital. So we ask all patients to provide IDF with your current contact information, including mailing address and e-mail address by visiting It is important that we have your updated contact information because the survey will be mailed to a sample of patients this December. If you have any questions regarding this upcoming study, please contact Christopher Scalchunes, Director of Survey Research, at 800-296-4433.

Since You Asked
IDF Question and Answer


Q: I have CVID and know that I should get my flu shot, but I am also allergic to eggs and I heard that eggs are used in the production of the virus used in the vaccine. What should I do?
Q: I went to the National Conference and had a great time. I remember that there was a photographer, but where can I find those photos that were taken?
Click “FULL STORY” to see the answer to these questions.


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Primary Immune Tribune is sponsored by an educational grant from Grifols

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