Primary Immune Tribune
February 2014
The New IDF Friends Website is LIVE!
Sign-in or Create an Account at www.idffriends.org

IDF Friends is the Immune Deficiency Foundation’s private social community created exclusively for patients and family members living with PI. The previous IDF Friends website was nearly five years old and past its optimal performance. For that reason, we created a new site that will give patients and families more ways to connect, learn, share and support.

The new IDF Friends is mobile-responsive (ready for tablet and smartphone use), and most importantly, it is 100% private and visible only to members. No one may access any site content without creating an account. If you had an account on the previous site, you will be able to login to the new site with the same sign-in information you have always used for your IDF Friends account. And if you did not have an account, you can set one up in seconds. Just visit www.idffriends.org and click where it says “New? Sign up today!”


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IDF Recommends Ig Coverage Policy Changes, BCBS IL Reviewing Denials

The Immune Deficiency Foundation and the PI patient community are very concerned about the issues patients have experienced as a result of the Blue Cross Blue Shield Illinois, Oklahoma, New Mexico, Montana, Texas and Health Care Services Corporation (HCSC) coverage policy for immunoglobulin replacement therapy. To read the background on this issue, go to: www.primaryimmune.org/bcbs-illinois-immunoglobulin-coverage-update.

While we still do not know what the final outcome of this specific issue will be, our communications with BCBS IL and HCSC are ongoing. As a result of our discussions with HCSC, the company is conducting a review of all denials of Ig replacement therapy for patients with PI over the past few months. In addition, all suspensions of care will be temporarily postponed until May 1, 2014, acknowledging the acute danger of removing Ig therapy from patients during flu season. While there is no guarantee, the hope is to have a better and permanent policy in place at that time which will provide better guidance regarding proper coverage for Ig therapy.


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Rare Disease Day February 28 Join Together for Better Care!

February 28 is Rare Disease Day, celebrated internationally to promote awareness of more than 6,000 rare diseases, including primary immunodeficiency diseases. This year’s theme is, “Join Together for Better Care!”

It is a day to recognize advancements in medical research and policy developments that are expanding hope in the rare disease community, and it is an opportunity to acknowledge all who come together to support the rare disease community—from healthcare professionals and policymakers to caregivers and family members.

Rare Disease Day is sponsored by National Organization for Rare Disorders (NORD) and the European Rare Disease Organization (EURORDIS). For more information, visit www.rarediseaseday.us.



IDF Announces 2014 IDF Walk for Primary Immunodeficiency Dates

The IDF Walk for Primary Immunodeficiency is the signature fundraising initiative of the Immune Deficiency Foundation (IDF). Our walk is a way to show the nation how teams of inspired individuals can make a difference and support IDF’s mission: improving the diagnosis, treatment and quality of life of persons with primary immunodeficiency diseases through advocacy, education and research.

IDF Walk for Primary Immunodeficiency will be in 6 cities in 2014!


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IDF Scholarships Available
Deadline March 31, 2014

IDF is currently accepting applications for two separate scholarships for students living with primary immunodeficiency disease. The Eric Marder Scholarship Program of IDF is open to undergraduate students living with a primary immunodeficiency, and the Varun Bhaskaran Scholarship Program of IDF is available to undergraduate or graduate students living with Wiskott-Aldrich Syndrome (WAS).

The deadline for scholarship applications is March 31, 2014. Scholarship awards will be announced in June 2014.

CLICK HERE for more information.

http://primaryimmune.org/services/idf-academic-scholarship-programs/



Newborn Screening Would Save Lives

CLICK HERE to read IDF President & Founder Marcia Boyle's opinion piece in the Baltimore Sun advocating for SCID Newborn Screening in Maryland.



Since You Asked
IDF Question and Answer

Q: Are there different treatment options for non-bacterial infections for someone with an IgA Deficiency?

Q: My doctor wants to learn more about Common Variable Immunodeficiency Disease (CVID) and low IgM. I have had some testing, but even my doctor admits to not knowing much about it. How do I know if I have had the correct testing if my doctor is unsure?

Click “FULL STORY” to see the answer to these questions.


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