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,…
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…
CureDuchenne Cares Workshop February 10, 2024 Atlanta, GA A FULL DAY EVENT FOCUSED ON IMPROVING THE QUALITY OF LIFE FOR INDIVIDUALS WITH DUCHENNE AND BECKER. CureDuchenne Cares is an interactive…
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…
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…
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…
CSNK2A1 Foundation Research Roadmap Webinar December 10, 2023 Join us for an exciting virtual event on Sunday, December 10th, as our esteemed Science Program Director, Dr. Gabrielle Rushing, presents a…
MDS Foundation Breakfast Symposium December 8, 2023 In conjunction with the 65th American Society of Hematology Annual Meeting and Exposition The 2023 Symposium will focus on recent advances in the…
Adults with CF Who Received a Late Diagnosis Online Support Group December 6, 2023 at 8 PM Online support group for adults with CF who received a late diagnosis.…
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…
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…
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 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…
MDS/MPN Overlap Syndrome Webinar November 4, 2023 In this webinar, Dr. Angela Fleischman will explain myelodysplastic syndromes/myeloproliferative neoplasms overlap syndrome with an overview of the different features between MDS and…
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…
Adults with CF Who Received a Late Diagnosis Online Support Group November 1, 2023 at 8 PM Online support group for adults with CF who received a late diagnosis.…
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…
2023 NORD Breakthrough Summit October 16-17, 2023 Registration is now open for NORD's Rare Diseases and Orphan Products Breakthrough Summit! On October 16-17 at the Marriott Marquis in Washington, DC, join hundreds of rare disease advocates,…
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
