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Statement from Shire Regarding Hurricane Harvey

Shire offers its concern and condolences to everyone affected by Hurricane Harvey. Our immediate concern is access to medication for the patients we serve.

Where we can, our Patient Services team is proactively working to reach patients and physicians in the area to offer support and arrange drug delivery, as needed.

If you or a loved one is affected by this tragedy and in need of support from Shire, please contact us.

Elaprase, Vpriv, Firazyr, Cinryze, Kalbitor, Natpara, Gattex: OnePath

To Members of the PI Community in the Houston Area

To Members of the PI Community in the Houston Area

We are absolutely heartbroken for all that your region has endured over the last several days, and for what is still to come.

As you might imagine, IDF’s ability to impact a crisis situation like this is limited. We have, however, reached out to medical professionals, therapy manufacturers, and others to help us better understand the challenges they are facing in case there are any areas where IDF can be helpful in the days to come.

Attention to People with PI Who Are Aetna Policy Holders

Aetna policyholders with primary immunodeficiency diseases (PI) are facing challenges accessing the immunoglobulin (Ig) replacement therapy that both they and their physician have chosen. The Immune Deficiency Foundation (IDF) has been working to address these challenges. Aetna’s 2017 drug formulary is a fail-first lowest cost drug formulary. This means that Aetna will only pay for the Ig therapies that are the lowest-cost to them.

Fundraising Tips for IDF Walk for Primary Immunodeficiency (PI)

If you have registered for IDF Walk for PI 2017 – congratulations! You have now joined the thousands of individuals in the fight for a better future for those affected by PI.

Your participation will help fund vital programs and resources for patients and families, all while spreading awareness of PI and promoting early diagnosis and proper treatment. Together, we are ZEBRA STRONG!

New Research on X-linked Carriers of Chronic Granulomatous Disease: Illness, Lyonization, and Stability

There is new clinical data in a recently released article on understanding X-linked Chronic Granulomatous Disease (CGD) carriers and the clinical manifestations associated with it. By undertaking a comprehensive retrospective study of 162 affected females and examining dihydrorhodamine 123 (DHR) oxidation data, lyionization and stability, researchers were able to determine that a low %DHR+ value strongly predicts infection risk in X-linked CGD carriers, and that the carrier state itself is associated with autoimmunity.

Arizona Now Screening Newborns for SCID

As of August 8, 2017, the State of Arizona has begun newborn screening for Severe Combined Immune Deficiency (SCID), making it the 45th state to begin statewide SCID screening.

IDF has worked diligently since fall of 2016 to educate Arizona policymakers on the importance of SCID newborn screening for all babies in the state. Arizona Governor Doug Ducey strongly endorsed SCID screening in his State of the State address in January of this year. Legislation was then signed into law in May to add SCID to the state newborn screening panel, authorizing screening to begin.


PI CONNECT is the IDF Patient-Powered Research Network. PI CONNECT connects the information you enter in your IDF ePHR, the online personal health record for patients with primary immunodeficiency (PI) developed by the Immune Deficiency Foundation (IDF), with the United States Immunodeficiency Network (USIDNET) patient-consented registry, which contains clinical data on several thousand patients with PI.


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