Latest News

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…

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…

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…

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…

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…

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…

Today, NORD issued a press release regarding how registries and natural history studies, like ours, are keys to understanding rare conditions and can help accelerate advancements that uncover new treatments. We are excited to be part of this group of rare disease foundations and thank NORD for its continued support of The APS Type 1…

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,…

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….