Category: News

You are not alone in this world, I love you, we all love you and are here to support you through your journey. Payton Ditty Hi! My name’s Payton. I was first diagnosed with APS Type 1 at the age of 7 after an adrenal crisis that lasted weeks. That was the start of my…

APS Type 1 research has long been seen as a bridge to gaining insights into the treatment of many other autoimmune disorders, and as this article makes clear, may also help provide a bridge into gaining insights the treatment of cancer. Title Autoimmunity and Cancer – Two sides of the Same Coin Authors Justyna Sakowska,…

We are thrilled to share with you that the video recordings from the 5th International Symposium on APS Type 1 are now available on Youtube! Please click here to watch the videos.

We were delighted to see many of you at our 5th International Symposium on APS Type 1. Our symposium brought together APS Type 1 families and medical experts from around the globe. Patients, families, caregivers, researchers, and clinicians had a chance to meet and get to know each other. We are particularly grateful to the doctors…

Join board members, Robin Finch and Laura Rivard, at Global Genes’ 12th Annual RARE Advocacy Summit, September 19-21, 2023, in San Diego, California. Each year, Global Genes convenes one of the world’s largest gatherings of rare disease patients, caregivers, advocates, healthcare professionals, researchers, partners, and allies at the RARE Advocacy Summit. This is an unparalleled…

In the early hours of July 28, 2017, Senator John McCain voted to preserve the Patient Protection and Affordable Health Care Act, better known as the “ACA” or even much better known as “Obama Care.”  There are two key provisions in this act that are of particular importance to our group:  1. Insurers are mandated…

Applications for the 2023 YARR Leadership Academy are now open! The YARR Leadership Academy is a series of online classes offered to a select group of advocates between 18 and 30 years old who are ready to be leaders in the rare disease community.YARR Leadership Academy students will learn about the roles and opportunities for patient representation in…

July 7, 2023 Today, the National Organization for Rare Disorders (NORD) and the APS Type 1 Foundation, a NORD member organization, announced the awarding of a $50,000 grant for research into this rare autoimmune disorder. The grant, which is part of NORD’s Jayne Holtzer Rare Disease Research Grants Program, was made possible by funding from…

The Hypoparathyroidism Association announces patient enrollment in a prospective natural history study being conducted Dr. Mishaela Rubin at Columbia University Irving Medical Center. This study aims to provide new insights into hypoparathyroidism’s long-term complications, including associated comorbidities and the effects on quality of life.

In March 2023, we posted about a potential new therapy to treat hypoparathyroidism from Ascendis Pharma. Click here to read the earlier post. Today, we update you that the U.S. Food and Drug Administration did not approve TransCon™ PTH just yet, but all hope is not lost. While the FDA is requiring additional information about…

We know a lot of our patients and families have been impacted by the recall of NatPara in 2019 with many of you on the compassionate use program that is slated to close at the end of 2024.   Todd Talarico recently had the opportunity to speak to the Head of Patient Advocacy for Ascendis…