Category: News

NORD Announces over $100,000 in Grant Funding Available for Rare Disease Research Three RFPs Now Open for Qualified Researchers through NORD’s Jayne Holtzer Rare Disease Research Grants Program April 29, 2022, Washington, DC – Today, the National Organization for Rare Disorders (NORD®) announced three new requests for proposal (RFP) for grant funding related to the following…

The CDC now recommends a 4th vaccine dose to be given at least 12 weeks after the 3rd dose for mRNA vaccines in patients >12 years old with moderate or severe immunocompromise. No such recommendation is yet given by the CDC for <12-year-old individuals. Given that APS1 patients carry type I IFN autoantibodies and many are also on immunomodulatory medications that can…

We are looking forward to hosting an international meeting of doctors & scientists working on APS Type 1 in-person in Toronto from Oct 6 to Oct 7, 2022! Please spread the news to all medical experts (this meeting is only open to clinicians and scientists but we’re also planning for our public international symposium in…

Did You Hear The BIG News?On Monday, April 4, 2022, the U.S. House of Representatives passed the Ensuring Lasting Smiles Act (ELSA) with supermajority support! We are thrilled that our small-but-mighty bill has passed the U.S. House of Representatives and is one step closer to becoming a law. We wouldn’t be here without the grass-roots efforts of our advocates…

Somewhat serendipitously, before NORD announced that Dr. Lionakis was named a 2002 Rare Impact Award Honoree, we had planned to feature Dr. Lionakis and his work. We especially want to recognize him for all that he has done to advance the scientific community’s understanding of APS 1/APECED as well as for his kind and compassionate care…

This year’s Rare Disease Day was a resounding success! Thank you to many of you for participating with the Zebra-themed shirts and jean ribbons, for joining the virtual event and for various activities you have conducted to raise awareness on rare diseases.  If you missed the wonderful virtual event organized by our friends at NORD,…

Meet Ashley Harris, APS Type 1 mom and administrator of the Foundation’s Community Facebook page for friends and families with APS Type 1. “Originally from San Antonio, TX, and currently living in Washington, D.C., my husband, Dave, and I met at the University of Alabama (Roll Tide) and have been living an adventurous and chaotic military life…

NATPARA® Update Pharmaceutical company Takeda continues to work with the U.S. Food and Drug Administration (FDA) to bring NATPARA® back on the market.  Unfortunately, there is more work to do.   Click on the link below to read Takeda’s recent regulatory update.  According to the update, Takeda plans to continue providing NATPARA® to those enrolled in its…

Pursue Your Dreams through the #RAREis Scholarship Fund The #RAREis Scholarship Fund was established in 2020 to help young adults with rare diseases to pursue their dreams through education. Thanks to the support of the #RAREis program by Horizon Therapeutics, The EveryLife Foundation is pleased to announce its third year of the #RAREis Scholarship Fund, a scholarship dedicated to the…

We are delighted to publish the official rapporteur’s report from the 4th International Symposium on APS Type 1 written by Dr. Si Yue Guo! Please click on the button below to download the report. If you missed the symposium, you are also welcome to check out our video recordings using the links below as well….

In partnership with the IDF (Immune Deficiency Foundation), we are planning a regular virtual get-together for our patient community, so that we can connect with other families and medical professionals in the APS Type 1 field! The virtual platform via Zoom allows us to meet and ask questions, share tips, and bond together with community…