*Win a 2026/ 2027 Membership to Salmon Falls Country Club Hollis, ME $100 minimum donation per chance 125 chances to win Donate June 11- July 9th Winner selected LIVE July 9th 8:00pm River Tap & Grill 52 Golf Course Lane, Hollis, ME Thank you, Salmon Falls Country Club/ River Tap & Grill for your generous …
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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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For many rare disease patients, medical nutrition products are life-sustaining medicine, yet insurance coverage for medical nutrition is inconsistent and varies widely based on a patient's diagnosis, insurance plan type, and state of residence. During this webinar, we'll teach you about the meaning of "medically necessary nutrition products", how medical nutrition coverage challenges impact the …
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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.
In an era of scientific and technological advances, rare disease care is changing every day. Join us for a robust panel discussion diving into different approaches to navigate and improve your rare care throughout each step of your journey. Register
Rare Cancer Day is an annual celebration devoted to raising awareness about rare cancers and the challenges people living with them face. This year, Rare Cancer Day is being recognized on September 23. For the rare cancer community, timely access to innovative diagnostic and comprehensive care can mean the difference between life and death. During …
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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.
Join NORD’s Rare Cancer Coalition on Thursday, September 17 at 12 p.m. ET for a webinar focused on exploring how patient perspectives can help strengthen and improve rare cancer research ahead of Rare Cancer Day. Experts and patients will discuss the opportunities and challenges rare cancer patients face when participating in research and share why integrating patient perspectives …
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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7th Annual Free All-Community Virtual MSA Conference - September 19-20, 2026 MSA Hub / Conference Registration MSA-Hub.circle.so Exciting lectures with both clinicians & researchers about MSA diagnosis, orthostatic hypotension, alpha-synuclein, biomarkers, disease mechanisms, and new treatments and clinical trials. There are also Ask the Doctor and Ask the Scientist Q&As, plus a Caregivers Breakout. Expert …
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