Fall Glut1 Gatherings on Zoom: Comunidad Hispana October 8, 2022 Our Zoom program provides opportunities for members of our community to meet up with others no matter where we live!…
Classical HCU Parent-Caregiver Online Meetup October 8, 2022 at 10 AM Online meet-ups are an opportunity to connect parents & caregivers impacted by classical homocystinuria to with each other. Whether…
Online Webinar: Protocol for Acromegaly Patient Care With Deanna Badiuk, Speaker October 7, 2022 After being diagnosed in 2008 with Acromegaly and realizing there was no support group in Western…
Web-Based Rare Chronic Illness Support Group A peer support group for those living with rare health challenges led by Kerry Heckman, MSW, LICSW 1st Tuesday of each month, 4-5pm PST…
4th Annual SYNGAP1 Golf Classic October 3, 2022 We are hosting our Fourth Annual SYNGAP1 Golf Classic and Silent Auction on Monday, October 3, 2022, at PANORAMA GOLF CLUB, 73…
Danny's Dose Family Education Event: Hot Springs, AR October 1, 2022 EDUCATION: Learn the "STEPS TO PROTECTION" for proper EMERGENCY PREPAREDNESS, "TREATMENT PLANS", working with your EMS/ER Staff, your existing…
GACI Global's Worldwide Walk September 25, 2022 The GACI/ARHR2 community, their family, friends, and supporters from around the world will be unified on one day, around one shared cause, when…
The 5th Annual Las Vegas Sickle Cell Walk September 24, 2022 Dreamsickle Kids Foundation 5th Annual Las Vegas Sickle Cell Walk, this event is the only fundraiser we have to…
The 1st International Workshop on Myelodysplastic Syndromes was held this year in Miami, FL from June 24-26. This in-person event was a convergence of researchers and clinicians to discuss advances…
Online CRPS Support Group August 17, 2022 Join Burning Nights CRPS Support for our next online (CRPS) peer support group on Wednesday 17 August 2022. Our online peer support groups…
2022 International Scientific Symposium on the Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders Community Day EDS & HSD Untangled: Ask The Experts---A Hybrid Conference September 18, 2022 The Ehlers-Danlos Society is…
Parenting Chronic Illness Webinar A web-based peer support group for parents of children living with health challenges led by Natalie Hopkins, MSW 2nd Monday of each month from 4-5pm This…
MDS Patient & Family/Caregiver Forum September 10, 2022 Presenters: Paul J. Shami, MD and Afaf Osman, MD, Huntsman Cancer Center Ashley Moncrief, RN, BSN, Vanderbilt University Medical Center Whether you…
WA State Rare Chronic Illness Support Group A supportive group for WA state residents living with rare health challenges facilitated by Carrie Pope, MSW, LICSW 2nd Friday of each month,…
Web-Based Rare Chronic Illness Support Group A peer support group for those living with rare health challenges led by Kerry Heckman, MSW, LICSW 1st Tuesday of each month, 4-5pm PST…
HCU Heroes Race for Research September 1-30, 2022 Set with the participants convenience, geography and their pace in mind, in 2019 our first race launched with just 14 participants and…
Classical HCU Virtual Meet-Up August 21, 2022 Meetups are an opportunity to connect patients and caregivers impacted by Classical Homocystinuria to one another virtually. About this event Struggling with the…
Cobalamin Disorders with Homocystinuria Meetup August 20, 2022 Online meet-ups are an opportunity to connect with patients and caregivers impacted by cobalamin disorders with elevations of homocysteine to one another…
Classical HCU Parent-Caregiver Online Meetup August 20, 2022 at 10 AM Online meet-ups are an opportunity to connect parents & caregivers impacted by classical homocystinuria to with each other. Whether…
Online CRPS Support Group August 17, 2022 Join Burning Nights CRPS Support for our next online (CRPS) peer support group on Wednesday 17 August 2022. Our online peer support groups…
The Cure Mito Foundation, a Patient Worthy partner organization, and integrative Cardiovascular Metabolism and Pathophysiology Laboratory (iCaMP) at Boston University, are hosting a virtual conference titled "Empower and Inspire: Understanding…
WA State Rare Chronic Illness Support Group A supportive group for WA state residents living with rare health challenges facilitated by Carrie Pope, MSW, LICSW 2nd Friday of each month,…
According to a story from Charcot-Marie-Tooth News, the Global CMT Research Convention is set to take place in Cambridge, Massachusetts on September 16-17, 2022. Organized by the CMT Research Foundation,…
Parenting Chronic Illness Webinar A web-based peer support group for parents of children living with health challenges led by Natalie Hopkins, MSW 2nd Monday of each month from 4-5pm This…
CureDuchenne Live Workshop August 6, 2022 Little Rock, AR A FULL DAY EVENT FOCUSED ON IMPROVING THE QUALITY OF LIFE FOR INDIVIDUALS WITH DUCHENNE. CureDuchenne Cares is an interactive education…
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