Feeling Fit with FSHD: Postural Changes, Part 2 February 23, 2023 Ulrike Uta will join us to discuss the experiences of the February 9 exercise class and answering questions. We…
Early-Onset Parent Roundtable February 21, 2023 Join us for our monthly Early-Onset Parent Roundtable on the 3rd Tuesday of each month, where parents meet to exchange ideas, offer support, and…
Monthly Gatherings: Parent and Caregiver Group February 18, 2023 Led by: Glenna Steele and Rob Rapaport Topics: Social time and support - come with questions, topics to discuss, or stories to…
February 15th is recognized annually as International Angelman Day, a day dedicated around the world to spreading awareness among the general public and in the medical field about Angelman syndrome,…
FSHD University: The FORTITUDE Trial February 14, 2023 Avidity Biosciences has announced its plans to launch FORTITUDE, a Phase 1 / 2 clinical trial in FSHD of the novel compound…
Wellness Hour - Towards Hope February 13, 2023 This month we will be joined by crisis counselors Kylee Helmke and Andrea Morales to discuss mental health issues that affect the…
Feeling Fit With FSHD: Postural Changes February 9, 2023 Join physiotherapist Ulrike Uta of the Muscular Dystrophy Support Centre (MD Support Centre) in Coventry, UK, for today’s session. Postural changes…
WM People of Color Support Group February 3, 2023 at 1:00 PM ET The WM People of Color Discussion Group will be having their next meeting for patients and caregivers…
Meet the Experts: Lung February 1, 2023 We are delighted to announce Professor Lisa Henske will be our next expert discussing her work on BHD and lung cysts. Lisa is…
Classical HCU Patient Virtual Meet-Up February 5, 2023 Meetups are an opportunity to connect patients and caregivers impacted by Classical Homocystinuria to one another virtually. About this event Struggling with…
Classical HCU Parent-Caregiver Online Meetup March 4, 2023 at 10 AM Online meet-ups are an opportunity to connect parents & caregivers impacted by classical homocystinuria to with each other. Whether…
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…
The Cambridge Rare Disease Network presents RARE Fest 2022 Engage.Educate.Empower. November 25-26, 2022 WE’RE BACK IN PERSON FOR RAREFEST22!! For the experts and the curious of all ages. For everyone.…
MDS Patient & Family/Caregiver Forum November 19, 2022 Presenters: Jeffrey J. Pu, MD, PhD, The University of Arizona Cancer Center Laura M. F. McPheeters, FNP-C, The University of Arizona Cancer…
Online Webinar: Labour And a Chronic Illness With Johan Beun, Speaker November 17, 2022 Johan served till 2009 as Ambassador for NICTIZ and was international advisor to various countries, ministries…
Rare X HCU Data Collection Program Facebook Live Chat: Oral Health Survey Webinar November 17, 2022 From short roots to crowding of teeth, patients with various types of homocystinuria experience…
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…
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…
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