Move for MDS Walk October 20, 2024 Boston, MA Register for your local Move for MDS community walk, fundraise and show support to those effected by MDS by joining the…
Move for MDS Walk September 22, 2024 New York, NY Register for your local Move for MDS community walk, fundraise and show support to those effected by MDS by joining…
Move for MDS Walk August 25, 2024 Chicago, IL Register for your local Move for MDS community walk, fundraise and show support to those effected by MDS by joining the…
Alport Connect 2024 July 27-28, 2024 Denver, CO ASF’s patient and family meeting, Alport Connect, will return in 2024. The in-person event will be held in Denver, Colorado. Please check…
Moving Mountains HCU Conference 2024 June 29-30, 2024 Aurora, Colorado The HCU Network America’s 4th patient-expert conference will be held on June 29-30, 2024, in Aurora, CO. This is an…
The 2024 FSHD Patient Connect Conference June 15-16, 2024 Denver, CO The FSHD Connect 2024 will be hosted on June 15-16 in Denver, Colorado. Held every two years, it is the…
FUTURES National Conference May 23-26, 2024 Orlando, FL The CureDuchenne FUTURES National Conference is an annual event focused on bringing education, connection, and hope to the entire Duchenne community. Get…
Women's Wellness Tea May 11, 2024 Golden Valley Country Club The Women’s Wellness Tea is an educational, social (and very fun!) event that celebrates women while exploring habits that lead…
MDS Patient & Family Forum May 11, 2024 St. Louis, MO Many patients and caregivers have never met another person diagnosed with MDS until they connected with them at one…
Move for MDS Walk May 5, 2024 Nashville, TN Register for your local Move for MDS community walk, fundraise and show support to those effected by MDS by joining the…
CureDuchenne Cares Dinner Session April 13, 2024 Pittsburgh, PA A NEIGHBORHOOD DINNER FOR CAREGIVERS AFFECTED BY DUCHENNE AND BECKER JOIN US FOR A CASUAL THREE-HOUR DINNER ON SATURDAY EVENING TO…
Move for MDS Walk April 7, 2024 Tampa, FL Register for your local Move for MDS community walk, fundraise and show support to those effected by MDS by joining the…
MDS Patient & Family Forum April 6, 2024 Baltimore, MD Many patients and caregivers have never met another person diagnosed with MDS until they connected with them at one of…
CureDuchenne Cares Workshop April 6, 2024 Long Island, NY A FULL DAY EVENT FOCUSED ON IMPROVING THE QUALITY OF LIFE FOR INDIVIDUALS WITH DUCHENNE AND BECKER. CureDuchenne Cares is an…
The overwhelming majority of rare diseases and conditions have a genetic basis. This means that the disease is the result of a genetic abnormality such as a mutation. These abnormalities…
CureDuchenne Cares Dinner Session March 16, 2024 Tampa, FL A NEIGHBORHOOD DINNER FOR CAREGIVERS AFFECTED BY DUCHENNE AND BECKER JOIN US FOR A CASUAL THREE-HOUR DINNER ON SATURDAY EVENING TO…
3rd Regional Symposium on Myelodysplastic Syndromes March 15-16, 2024 Kyoto, Japan The 3rd Regional Symposium on Myelodysplastic Syndromes will take place from 15-16 March 2024, in Kyoto, Japan. MDS is…
Champions in Miami 2024 March 9, 2024 Miami, FL This gala is not just an exquisite gathering; it serves as a significant source of support for CureDuchenne, empowering the organization…
CureDuchenne Cares Workshop March 9, 2024 Baltimore, MD A FULL DAY EVENT FOCUSED ON IMPROVING THE QUALITY OF LIFE FOR INDIVIDUALS WITH DUCHENNE AND BECKER. CureDuchenne Cares is an interactive…
2nd Annual Bradley Z. Naifeh Amyloidosis Conference March 2, 2024 Houston, TX Presented by the Bradley Z. Naifeh Amyloidosis Clinical Research and Treatment Program at Houston Methodist J.C. Walter Jr.…
2024 Light the Night for Amyloidosis Month March 1-31, 2024 "Light the Night for Amyloidosis" is an awareness campaign created to draw attention to amyloidosis symptoms, diagnosis, treatment, and hopefully a…
CureDuchenne Cares Dinner Session February 24, 2024 Charlotte, NC A NEIGHBORHOOD DINNER FOR CAREGIVERS AFFECTED BY DUCHENNE AND BECKER JOIN US FOR A CASUAL THREE-HOUR DINNER ON SATURDAY EVENING TO…
Editor's Note: Chronic conditions and rare diseases don't discriminate, Patient Worthy and its partners are interested in amplifying the voices of those from all identities and backgrounds. If you have…
'Newborn screening in leukodystrophies' by Lucia Laugwitz February 20, 2024 Educational webinars on rare neurological, neuromuscular and movement disorders jointly organized by the European Reference Networks for Rare Neurological Diseases…
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,…
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