Primary Immune Tribune
January 2015
Power Up Your Health with IDF ePHR

The Immune Deficiency Foundation (IDF) challenges you to POWER UP YOUR HEALTH with IDF ePHR, the electronic personal health record designed for the primary immunodeficiency (PI) community. IDF ePHR features innovative tools to help you improve your health and organize your info—even on the go!

The first 1,000 people to sign up for IDF ePHR in 2015 will receive a free portable electronic charger, and you’ll also be entered to win one of three incredible prizes:

  • iPad® Air 2, 16 GB
  • iPad® Mini 3, 16 GB
  • $100 American Express® Gift Card

The drawing will be held during National Primary Immunodeficiency Awareness Month and World PI Week, April 29, 2015. Winners will be announced via IDF social media, and winners will receive an e-mail. See official rules and further details at www.primaryimmune.org/challenge.



IDF 2015 National Conference in New Orleans
Registration Begins in February

Join the Immune Deficiency Foundation (IDF) in New Orleans for our eighth national conference as we gather in the Crescent City! The IDF 2015 National Conference will take place at the Hyatt Regency New Orleans on June 25-27, 2015. After a successful IDF 2013 National Conference, held in Baltimore, MD, with over 1,200 people from 12 countries, 44 states and Washington, DC, were preparing to do it again!

The IDF National Conference is our preeminent event, held biennially in cities throughout the U.S., and is a platform for all facets of the PI community. From healthcare professionals to specialized life management experts, patients and family members are presented with an unsurpassed opportunity to learn from those on the cutting edge of research and treatment. The networking and entertainment venues, as well as the times to share ideas, support and laughs, are bound to create memories to last a lifetime for attendees of all ages. The IDF 2015 National Conference is packed with sessions and activities that we hope you enjoy!

Visit www.idfnationalconference.org to learn more.



Oklahoma Begins SCID Newborn Screening

Oklahoma is the first state in 2015 to add Severe Combined Immunodeficiency Syndrome (SCID) screening to their newborn screening panel. The existing rule (Title 63 O.S. Section 1-104) has been amended to include Severe Combined Immunodeficiency Syndrome (SCID) as a new test in the core panel of 29 genetic disorders for newborn screening (NBS) in Oklahoma, as recommended by the Advisory Committee on Heritable Disorders in Newborns and Children and the Newborn Screening Subcommittee of the Oklahoma Genetics Advisory Committee.

CLICK HERE to learn more about the IDF SCID Newborn Screening Campaign and to view the Current Status of Implementation Map.



New Savings Plan for the Disabled
Savings Vehicle Offers Disabled the Benefits of Tax-Free Growth

For the first time, a new type of savings plan offers the disabled and their families the benefits of tax-free growth. In addition to offering tax-free growth, the “529 ABLE” plan, authorized by Congress in late 2014, will allow people with disabilities to save as much as $100,000 and still qualify for benefits including Medicaid and Supplemental Security Income (SSI). Previously, to qualify for SSI, a person could have no more than $2,000 in assets.

CLICK HERE to read an article in The Wall Street Journal that discusses the new plan in greater detail.


Volunteer Help Wanted!

IDF supporters have many skills and we have interesting projects going on. To learn more about our talent needs, we will use this space regularly to let you know about specific volunteer opportunities IDF has where special expertise is needed. Then, simply contact us if you think you qualify and are up to the challenge! For more details about what is needed now, and how you might help, be sure to click "FULL STORY" below.


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The IDF Office Has Moved!

Our new mailing address is 110 West Road, Suite 300, Towson, Maryland 21204. Phone numbers remain the same. If you ever have a question, please call 800-296-4433 or complete our Ask IDF form: http://primaryimmune.org/ask-idf/


Since You Asked
IDF Question and Answer

Q: My husband and daughter have IgA deficiency. I am eight months pregnant and would like to know if I should have the baby tested right away for this deficiency. Also, should I delay vaccinating the baby?

Q: I am getting over the flu and now have to take care of a family member who has the flu. Can I be re-contaminated by the virus?

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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