We Proudly Welcome our Inaugural Executive Director

We Proudly Welcome our Inaugural Executive Director

Meet Svetlana Hutfles We are delighted to share a momentous occasion in our journey towards finding a cure for APS Type 1 and supporting those affected by this rare disease. Thanks to the generosity of our dedicated donors and supporters, The APS Type 1 Foundation is proud to announce that it has hired its inaugural…

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Ascendis Pharma Announces Extension of U.S. Food and Drug Administration Review Period for TransCon™ PTH for Adults with Hypoparathyroidism

COPENHAGEN, Denmark, May 14, 2024 (GLOBE NEWSWIRE) — Ascendis Pharma A/S (Nasdaq: ASND) today announced that the U.S. Food and Drug Administration (FDA) notified the Company that information submitted in response to the FDA’s ongoing review of the New Drug Application (NDA) for TransCon PTH (palopegteriparatide) for adults with hypoparathyroidism constituted a major amendment to the NDA. Accordingly, the FDA has…

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At the Finish Line!

At the Finish Line!

We did it! Thanks to all the biking, running, hiking, tae kwan do, rock climbing, salsa dancing, house work, HIIT work outs, sailing, weight lifting, walking, CrossFit, yard work, hot yoga, rowing, pickleball, circuit training, swimming, stretching, cooking, trail running, pilates, surfing, and spinning that you AMAZING people logged, as a team we covered 1647.2…

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Foundation Grant Yields Two Scientific Publications

We are grateful to all the members of APS Type 1 Foundation for their continuous support and advice. We thank APS Type 1 Foundation’s families for their hard work to raise funds to support APS-1 research. Rachid Tazi-Ahnini and Mimoun Azzouz In 2019, the Foundation’s research grant was awarded to Rachid Tazi-Ahnini and Mimoun Azzouz…

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Forever in Blue Jean for Genes was a Super Diamond Success

Forever in Blue Jean for Genes was a Super Diamond Success

Dear Friends, Family and all APS Type 1 Supporters, The words “Thank You” do not feel sufficient to express our sincere gratitude for your generous support of the APS Type 1 Foundation at “Forever in Blue Jeans for Genes” last month. Looking back on the event, we were overwhelmed to feel all the love in…

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Externally Led Patient Focused Drug Development (EL-PFDD) Meeting

Many in our APS type 1 community are affected by hypoparathyroidism. On March 5th, Julia Richardson joined about a dozen other patients, to share the impact of hypoparathyroidism and treatment at an Externally Led Patient Focused Drug Development (EL-PFDD) meeting. The goal of the meeting was to share the effects of the disease and the…

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A message from our President, Todd Talarico

Welcome to 2024, we hope that you and your family have kicked off the new year with good health and happiness!   Our spring newsletter will highlight some of the amazing activities of our community already this year and provide you with a look at what we are focused on for 2024.  Make sure you read about…

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FOCIS Conference

We are thrilled to announce that The APS 1 Foundation is partnering with the Clinical Immunology Society and National Institute of Allergy and Infectious Diseases (NIAID)  to hold a symposium at this June’s FOCIS conference in San Francisco. FOCIS will bring together leading clinicians and researchers delivering the latest breakthroughs across immunology. It is a key meeting for translational immunology. The title of the…

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AstraZeneca inks $800M buyout of French biotech to snag phase 3 rare disease drug

By Nick Paul Taylor AstraZeneca is paying $800 million to expand into rare endocrinology, snagging itself a phase 3 candidate through the acquisition of French biotech Amolyt Pharma. The deal features $250 million in milestones tied to a regulatory event. Buying Amolyt will give AstraZeneca control of eneboparatide, a PTHR1 agonist that the biotech moved into phase 3 in June….

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2024 Rare Disease Day: How You Can Make A Difference!

On February 29th, please join us in raising awareness about APS Type 1 as we celebrate the Rare Disease Day! Post messages, photos, videos, or whatever you think best shares your story on social media and add the hashtag #APS1WeAreRare. February 29th is the International Rare Disease Day. This day is dedicated to raising awareness and generating change for the 300…

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