Patient Grant Opportunity

Patient Grant Opportunity

With funding from the Global Genes’ Continuity of Care RARE Patient Impact Grant, the APS Type 1 Foundation is offering grants to APS1 Households Impacted by COVID-19. COVID-19 has had widespread impacts throughout our communities in more ways than we can know.  What do know, however, is that COVID-19’s impact on the rare disease community…

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IDF-APS1 Get Connected

IDF-APS1 Get Connected

The APS Type 1 Foundation, in partnership with Immune Deficiency Foundation (IDF),  is offering a diagnosis-specific Get Connected Group for the APS Type 1 community on June 6, 2020, 1:00-2:30 p.m. ET. The program is being offered virtually through Zoom, the online meeting platform accessible through computer, smart phone, or telephone. This Get Connected Group…

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COVID-19 Steroid Stress Dosing Guidelines from NADF

Dear APS Type 1 Family, We hope that you and your families are fairing well through this challenging pandemic. Although this is a stressful time for all of us, it also provides us with an opportunity to strengthen our bonds by spending time connecting with family and friends either in our homes, virtually, or by…

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COVID-19: Todd Shares Updated Information from IDF

 APS Type 1 Family and Friends, As we complete our first week at home of what looks to be a long Spring ahead, we hope you have settled into your new normal and that you are all safe, healthy, and surrounded by loved ones. The news continues to provide important information around how you can…

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Lessons from the NORD Summit

Lessons from the NORD Summit

Jennifer Orange, October 2019 In late October, I travelled to Washington DC to attend the National Organization for Rare Disorders Summit. For me the Summit had three parts. I spent Sunday, October 20 with a group of inspiring leaders of rare disease organizations in a session designed to facilitate organizational development. It was remarkable how…

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Gaby’s Story

Gaby’s Story

This is our story about Gaby’s 6 years of missed diagnosis, and how you can prevent this from happening.

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