Update on the 5th International Symposium on APS Type 1

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…

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Global Genes’ 12th Annual RARE Advocacy Summit

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…

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Dave’s Research Corner: Thoughts on SSDI, SSI and other benefits

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…

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The 2023 YARR Leadership Academy

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…

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Update on New Hypoparathyroidism Therapy

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…

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APS Type 1 Foundation Observes Rare Disease Day in Stride

From February 13th through February 28th (Rare Disease Day), APS Type 1 patients, families, and supporters gathered virtually to participate in a 1000-mile walk. The purpose of the online “race” was to raise awareness of APS Type 1, build community, and fundraise for critical research and programming. The event also honored the memory of James…

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Dave’s Research Corner – March 2023 – Spotlight on Thymmune

Article: “This stem cell startup is designing a therapy to restore and boost immunity” Author: Ryan Cross Newspaper: Boston Globe March 1, 2023, 12:01 a.m. Click here for the link to the article Key quotes:  “(Dr.) Wang wants to use his company’s thymus cells as a therapy that helps people getting bone marrow or organ…

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