Empower&Inspire: Understanding and Accelerating Research for Leigh Syndrome Virtual Conference September 19, 2023 Please join us for a virtual conference focused on Leigh Syndrome. Researchers, industry, patients, and patient families…
Oakland A's Game Day Uplifting Experience September 15, 2023 Alameda County Coliseum, Oakland, CA Uplifting Athletes is excited to invite rare individuals and families to join us for a memorable…
The International Pemphigus and Pemphigoid Foundation is holding its 2023 Patient Education Conference from October 27-29, 2023. Since 2020, this conference has been held virtually online, and this format will…
MDS Patient & Family/Caregiver Forum September 9, 2023 Los Angeles, CA Many patients and caregivers have never met another person diagnosed with MDS until they connected with them at one…
FD/MAS Community Conference 2023: Facing the Future - Together September 8-10, 2023 We proudly invite you to the FD/MAS Community Conference: a weekend of education, connection, and collaborative research. The…
Web-Based Living with Thyroid Eye Disease Support Group A supportive, web-based peer support group for those living with thyroid eye disease. facilitated by Kerry Heckman, MSW, LICSW 1st Tuesday of…
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…
An Evening for a Life Rebalanced Virtual Fundraising Gala August 24, 2023, 8 PM You are invited to come together with the vestibular community and show your support by attending…
CHIP and CCUS, Precursors to MDS August 19, 2023 There have been marked developments in the understanding of clonal hematopoiesis based on findings of somatic mutations in genes known to…
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…
Note: These quotes and reflections are from members of the cystinosis community who were in attendance at the 2023 Cystinosis Research Network Family Conference which took place in Nashville, TN…
2023 Hybrid Global Learning Conference August 2-5, 2023 The Ehlers-Danlos Society is delighted to announce 2023 Global Learning Conference will be a hybrid event, taking place in Dublin, Ireland from…
Web-Based Living with Thyroid Eye Disease Support Group A supportive, web-based peer support group for those living with thyroid eye disease. facilitated by Kerry Heckman, MSW, LICSW 1st Tuesday of…
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…
Updates from the 17th International Congress on MDS: Promising Treatment Advances July 29, 2023 In this webinar, Dr. Moshe Mittelman will provide an overview of the most promising research presented…
CFRI's 35th Virtual National CF Education Conference: Focus on the Future July 28-30, 2023 CFRI’s National CF Education Conference will be held in-person and virtually. The Conference kicks off Friday,…
Web-Based Living with Urea Cycle Disorder Support Group A supportive, web-based peer support group for those living with urea cycle disorder. facilitated by Annie Moon, LMFT 3rd Wednesday of every…
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…
Minnesota Twins at Seattle Mariners Game Day Uplifting Experience July 17, 2023 T-Mobile Park, Seattle, WA Uplifting Athletes is excited to invite rare individuals and families to join us for…
2023 Lafora Disease Science Symposium Registration October 9-10, 2023 Bologna, Italy Lafora disease researchers and clinicians at Instituto delle Scienze Neurologiche di Bologna (ISNB) IRCCS will host the 8th Annual Lafora Disease…
2023 CRN Conference July 13-15, 2023 After four years apart, we welcome you to join us in Nashville, Tennesse, lovingly known as “Music City.” In addition to being surrounded by…
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 World Orphan Drug Congress USA 2023 was held from May 23-25, 2023, at the Gaylord National Resort & Convention Center in National Harbor, MD. This conference is focused solely…
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…
30th Annual FSHD Society International Research Congress June 15-16, 2023 Milan, Italy The FSHD Society’s annual FSHD International Research Congress is the premier global conference exclusively focused on facioscapulohumeral muscular…
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