The SynGAP Research Fund Presents: SynGAP Soiree: Sparks of Hope November 12, 2022 We are thrilled to announce the SYNGAP SOIREE • SPARKS OF HOPE fundraising gala. This event will bring together…
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,…
MDS Patient & Family/Caregiver Forum November 5, 2022 Presenters: Stephen Chung, MD Yazan Madanat, MD Madhuri Vusirikala, MD Amber Thomassen, AGPCNP-BC, AOCNP Whether you are a newly diagnosed patient, a…
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…
Cobalamin Disorders with Homocystinuria Meetup October 23, 2022 Online meet-ups are an opportunity to connect with patients and caregivers impacted by cobalamin disorders with elevations of homocysteine to one another…
Fall Glut1 Gatherings on Zoom: Child Glut1 Pals October 22, 2022 Our Zoom program provides opportunities for members of our community to meet up with others no matter where we…
Fall Glut1 Gatherings on Zoom: Parents October 22, 2022 Our Zoom program provides opportunities for members of our comGlmunity to meet up with others no matter where we live! These…
Danny's Dose Family Education Event: Baton Rouge, LA October 22, 2022 FOR ADULTS and FAMILIES LIVING WITH RARE DISEASE OR CHRONIC ILLNESS REQUIRING SPECIALIZED EMERGENCY CARE and/or MEDICATIONS! 10:00 –…
Online Webinar: Fighting Against the Global Issue of Substandard (SF) and Falsified Medical Products With Dr. Bahijja Raimi-Abraham October 20, 2022 Dr Bahijja Raimi-Abraham is a pharmacist, Lecturer in Pharmaceutics…
The Rare Diseases + Orphan Products Breakthrough Summit October 17-18, 2022 This year, NORD is thrilled to welcome the rare family and all community stakeholders back together in-person to Washington,…
Fall Glut1 Gatherings on Zoom: Adult Overcomers October 16, 2022 Our Zoom program provides opportunities for members of our community to meet up with others no matter where we live!…
MDS Patient & Family/Caregiver Forum October 15, 2022 Presenters: Sanjay Mohan, MD, Vanderbilt University Medical Center Ashley Moncrief, RN, BSN, Vanderbilt University Medical Center Whether you are a newly diagnosed…
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,…
2022 PBC Conference October 13-15, 2022 Durham, NC Don't miss this year's PBC Conference, an event geared towards education, support, and research related to primary biliary cholangitis and the patient…
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…
Classical HCU Virtual Meet-Up October 9, 2022 Meetups are an opportunity to connect patients and caregivers impacted by Classical Homocystinuria to one another virtually. About this event Struggling with the…
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…
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