ED for EDS4 presents their 3rd Annual Golf Tournament to benefit the National Organization for Rare Disorders, hosted at the Heritage Country Club in Charlton, MA. Swing by after the tournament for dinner and a chance to win cash and prizes. Click here to enlarge the image.
Can’t make it to an in-person event? The National Organization for Rare Disorders (NORD®) is bringing the community straight to your screen! Registration is now officially open for the FREE Living Rare, Living Stronger® Summer Webinar Series, designed specifically for patients, families, and caregivers. Join us for candid conversations, essential education, and community-building. Here is …
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Pericarditis Alliance offers a once a month virtual support group for patients and their families to check in, connect and learn from each other. They invite speakers to talk about topics such as adopting an anti-inflammatory diet and functional medicine. At the end of each meeting, they invite participants to join in a short …
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ED for EDS4 presents its 1st Annual Poker Run on Sunday, September 13 in Charlton, MA. Click here to enlarge the image.
Register today for the 2026 MSD Virtual Summit! This FREE, two-day, online gathering will bring together researchers, clinicians, families, advocates, and partners from around the world. Through shared knowledge, lived experience, and innovative efforts, we move closer to better care and future therapies for Multiple Sulfatase Deficiency. In the coming weeks, we will update this page …
On September 19, the 2026 Face Forward Patient Support Summit will bring together patients, caregivers, clinicians and advocates for an inspiring day of connection, education, and empowerment. This event will feature: Expert medical presentations on the latest RHS research and treatment advances Interactive workshops and wellness sessions for patients and caregivers Networking and advocacy opportunities …
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Survivor Support Group – Monthly Virtual Meetings Dates: Third Saturday of each monthTime: 3:00 PM ETLocation: Online via ZoomRegistration: Register here The Raymond A. Wood Foundation's Survivor Support Group offers a monthly virtual gathering for adult survivors of hypothalamic-pituitary brain tumors. Moderated by brain tumor survivor Jason Burris, these sessions provide a safe space to …
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Join community members for an evening of celebration and purpose at our Oktoberfest-themed happy hour! Enjoy authentic German beer, delicious food, live music, and exciting raffle prizes - all while supporting a powerful cause. Last year's inaugural event raised over $50,000 for the National Organization for Rare Disorders (NORD). The Benassi family, alongside business partners …
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Pericarditis Alliance offers a once a month virtual support group for patients and their families to check in, connect and learn from each other. They invite speakers to talk about topics such as adopting an anti-inflammatory diet and functional medicine. At the end of each meeting, they invite participants to join in a short …
Continue reading "Pericarditis Alliance Virtual Support Group Every 1st Saturday"
Join Cure HHT in Cape Cod, October 12-16, 2026, as breakthroughs set sail at the 16th HHT International Scientific Conference. Together, we'll explore the latest advances in HHT research, diagnosis, and care -- connecting scientists, clinicians, and innovators from across the globe. Engage in bold discussions, share discoveries, and help shape the next era of …
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Survivor Support Group – Monthly Virtual Meetings Dates: Third Saturday of each monthTime: 3:00 PM ETLocation: Online via ZoomRegistration: Register here The Raymond A. Wood Foundation's Survivor Support Group offers a monthly virtual gathering for adult survivors of hypothalamic-pituitary brain tumors. Moderated by brain tumor survivor Jason Burris, these sessions provide a safe space to …
Continue reading "🌟 Raymond A. Wood Foundation Survivor Support Group – Monthly Virtual Meetings"
The 2026 NORD Rare Diseases + Orphan Products Breakthrough Summit will welcome more than 900 key stakeholders in the rare disease community to Washington, D.C. on October 25-27, 2026. This event brings together thought leaders in industry, academia, patient advocacy, and government for the latest updates on rare disease diagnosis, drug development, research, patient engagement, public policy …
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