SynGAP Research Fund's Involvement of the Brain Endothelium in Neurodevelopmental Disorders Webinar May 18, 2023 Speaker: Dr. Baptiste Lacoste, Associate Professor, Faculty of Medicine, University of Ottawa To register, click…
Web-Based Living with Cystinosis Support Group A supportive, web-based peer support group for those living with cystinosis facilitated by Kerry Heckman, MSW, LICSW 3rd Tuesday of each month 4-5 PM…
NORD's Living Rare, Living Stronger Patient & Family Forum May 6, 2023 featuring the Rare Impact Awards (May 4) Hosted at the Renaissance Downtown Hotel, we will bring the rare disease…
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…
MS Views and News Compass to MS Care April 29, 2023 Special Guest Speaker: Megan Weigel, DNP, ARNP-C, MSCN Presentation includes: • Understanding more about MS • How to access…
HealthReady has partnered with the Beckley Foundation for a virtual coffee break webinar program titled "Use Your Child's Health Data for Better Outcomes in Neuroblastoma." Neuroblastoma is a dangerous cancer…
SynGAP Research Fund's A Data-Driven Approach to Reconstructing Disease Trajectories in SYNGAP1-Related Disorders April 27, 2023 Speaker: Jillian McKee, MD, PhD, Children's Hospital of Philadelphia To register, click here.
Research Roundtable: Understanding Speech and Language Challenges in Glut1 Deficiency April 25, 2023 Featuring Professor Dr. Jörg Klepper and Kristina Simonyan, MD, PhD, Dr. Med To register, click here.
Psychological Well-Being and MDS April 22, 2023 In this webinar, Dr. Hermioni Amonoo will share her tools for taking care of your mental health and emotional well-being following a cancer…
The 2023 IWMF Educational Forum Learn, Grow, Empower April 21-23, 2023 St. Louis, MO The 28th Annual IWMF Educational Forum will be a unique experience to learn from medical experts and…
Web-Based Living with Cystinosis Support Group A supportive, web-based peer support group for those living with cystinosis facilitated by Kerry Heckman, MSW, LICSW 3rd Tuesday of each month 4-5 PM…
Spring Low Protein Cooking Class Online April 1, 2023 at 2:00 PM Join HCU Network America and Chef Amber as she demonstrates for us 3 quick and easy low protein…
SynGAP Research Fund's Brain Banking and the Hispano-American Brain Bank for Neurodevelopmental Disorders March 23, 2023 Speaker: Veronica Martinez-Cerdeno, PhD, Professor, Dept of Pathology & Laboratory Medicine, UC Davis To…
CureGRIN's GRI Conference 2023 March 23-26, 2023 Join us in Boston for this year's conference. GRI Conference 2023 is a special annual opportunity for clinicians, industry reps, GRI families, and…
Monthly Gatherings: Parent and Caregiver Group March 18, 2023 Led by: Glenna Steele and Rob Rapaport Topics: Social time and support - come with questions, topics to discuss, or stories to…
SynGAP Research Fund's Harnessing Messenger RNA Metabolism for the Development of Precision Gene Therapy March 16, 2023 Speaker: Jeff Coller, PhD., Johns Hopkins To register, click here.
VEDA's Annual Virtual Conference: Life Rebalanced March 6-10, 2023 The Vestibular Disorders Association will be hosting its third annual Virtual Vestibular Conference. Vestibular disorders cause a variety of disorienting and…
Rare Disease Week on Capitol Hill February 28-March 2, 2023 NOTE: Rare Disease Week on Capitol Hill 2023 is an in-person event with some events accessible via livestream. Meetings with…
FSHD University: Dr. Rita Perlingeiro on Stem Cell Research and FSHD February 23, 2023 Our webinar speaker is Dr. Rita Perlingeiro, Associate Professor of Medicine within the Lillehei Heart Institute…
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…
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