Here’s What You Missed…

We had a great Get Connected Zoom on May 15th. We missed you. Without breaching any confidentiality, we discussed and shared about the following topics: Alopecia and Vitiligo, including possible treatments Upcoming Virtual Symposium Covid-19 Vaccines Long-acting hydrocortisone Home calcium monitors and more We hope you can join us next time. Get Connected Zooms are…

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Sharing NADF’s Quarterly Newsletter

The National Adrenal Diseases Foundation, whose mission is to inform, educate, and support those with adrenal disease and their families to improve their quality of life, publishes a regular newsletter that always contains useful information for our community. We are pleased to share the June 2021 National Adrenal Diseases Foundation Quarterly with you. Click here…

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Join the IDF National Conference from June 23-26!

The IDF Primary Immunodeficiency Conference Is going virtually this year, and the APS Type 1 Community are invited. The conference is free for our patients and families, so please join in! There are many sessions that will interest our patients and family members of all ages, and there are three that specifically focus on APS…

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The NIH Needs Our Help!

The APS Type 1 Foundation continues to work closely with Dr. Lionakis and his team at the National Institutes of Health (NIH) to bring forward important information in support of the health and well-being of our community.   In collaboration with researchers around the globe, the NIH continues to evaluate of the impact of Covid-19 with…

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Join the EveryLife Foundation for Rare Diseases for RARE Disease Week on Capitol Hill, June 14th-22nd (Virtual)

The APS Type 1 Foundation is pleased to share this advocacy opportunity with you. Rare Disease Week on Capitol Hill brings together rare disease community members from across the country to be educated on federal legislative issues, meet other advocates, and share their unique stories with legislators. While the EveryLife Foundation for Rare Diseases had…

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EveryLife Foundation Offers #RAREis Scholarship

Pursue Your Dreams through the #RAREis Scholarship Fund Offered by the EveryLife Foundation for Rare Diseases. The EveryLife Foundation for Rare Diseases is pleased to open applications for the second year of the #RAREis Scholarship Fund. Thanks to the support of Horizon Therapeutics plc, one-time awards of $5,000 each will be granted to up to…

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A Rare Disease Day Toolkit!

Do you know a student who is interested in raising awareness? February 28 (the rarest last day of the year) marks World Rare Disease Day.  Julia Band Orange and Julia Finch have compiled materials to create a “Rare Disease Day In-a-Box”!  Please click here to find an awareness video, a sample speech, an article for a school…

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Calling Young Adults…Do You Want to be a Rare Disease Leader?

Have you ever wanted to make an even bigger impact? Now’s your chance. The EveryLife Foundation for Rare Diseases is calling on young adults to join its YARR Leadership Academy. The Young Adult Representatives of RDLA (YARR) launched the YARR Leadership Academy, a series of on-line courses offered to a select group of young adults…

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Global Genes Recognizes Todd Talarico as a RARE LEADER

We are pleased to share today that Global Genes recognizes APS Type 1 Foundation President, Todd Talarico, as a Rare Leader. Please click here to read about our foundation through Todd’s lens. We are thrilled to have Global Genes recognize our foundation and our fearless leader. We remain committed to our mission of increasing awareness,…

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NORD applauds critical health care reforms

NORD applauds critical health care reforms   NORD and 18 other patient organizations representing millions of people with pre-existing conditions issued a statement on June 30 in support of specific patient protections and affordability provisions included in the Patient Protection and Affordable Care Enhancement Act, which passed in the House of Representatives on June 29….

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