Do you love golfing? Interested in making a difference for patients with amyotrophic lateral sclerosis (ALS)? If you're located in or around Oceanside, CA, then I have an event…
2021 GRIN2B Family Weekend July 9-10, 2021 This event is open to patients and families affected by GRIN2b-related neurodevelopmental disorder and related diseases. The weekend will be focused on building…
Patient Worthy was a media partner at this year's NORD Living Rare, Living Stronger Patient and Family Forum. This is an annual event hosted by the National Organization for Rare…
RAREsummit21 October 7, 2021 CRDN's RAREsummit21 is designed as a platform for change. This is an opportunity to hear from and engage with the stakeholders that are creating change across…
Patient Worthy was a media partner at this year's NORD Living Rare, Living Stronger Patient and Family Forum. This is an annual event hosted by the National Organization for Rare…
Patient Worthy was a media partner at this year's NORD Living Rare, Living Stronger Patient and Family Forum. This is an annual event hosted by the National Organization for Rare…
Twin Talks Webinars: Twin Anemia Polycythemia Sequence 101 June 29, 2021 This webinar will be focused on answering any questions that the audience wants to know about twin anemia polycythemia…
The 2021 Living Rare, Living Stronger Patient and Family Interactive Virtual Forum Featuring the Rare Impact Awards June 26-28, 2021 This forum is specifically geared to be a patient-centric event.…
Patient Worthy signed up to cover several sessions at the Huntington's Disease Society of America's (HDSA) 36th Annual Convention, which was held virtually this year. This event features informative presentations…
The Primary Immunodeficiency Conference June 23-26, 2021 This conference is the largest primary immunodeficiency (PI) patient gathering on Earth. Patients, clinicians, and caregivers will come together for this virtual event…
Patient Worthy signed up to cover several sessions at the Huntington's Disease Society of America's (HDSA) 36th Annual Convention, which was held virtually this year. This event features informative presentations…
Patient Worthy signed up to cover several sessions at the Huntington's Disease Society of America's (HDSA) 36th Annual Convention, which was held virtually this year. This event features informative presentations…
In an innovative collaboration, the TAPS Support Foundation and the Fetal Therapy team from the Leiden University Medical Center announced today a new joint initiative – The Twin Talks Webinar…
Rare Mother Meetup 6:00 PM, PST The Rare Mother Meetup will take place on the second Wednesday of each month and is hosted by Rare Mother Ashley Kenny. The meetup…
The month of June is recognized as CDKL5 Awareness Month, a time set aside to spread awareness about CDKL5 deficiency disorder among the general public and the medical community. June…
The month of June is recognized as Scleroderma Awareness Month, a time for spreading awareness about the rare disease scleroderma in the medical community and among the general population. This…
Becoming a Partner in Your Care: MDS Support Group June 5, 2021 Speaker: Sandra Kurtin, PhD, ANP-C, AOCN; The University of Arizona Cancer Center This free webinar is geared to supporting…
The month of June is here and every year it is recognized as Myasthenia Gravis (MG) Awareness Month. This is a time meant to help spread awareness about myasthenia gravis…
FSHD University: The Job Talk w/ Lynn Stevens May 20, 2021 Many people with FSHD have given up when it comes to work. They often believe they are unemployable and…
The month of May is recognized as Myositis Awareness Month, a time to play your part in spreading awareness about myositis among the general public and in the medical community.…
Online Support Group for Cystic Fibrosis Caregivers May 18, 2021 CFRI provides a monthly CF Caregivers Online Support Group, which is open to participants nationwide. The group is facilitated by…
RARE on the Road 2021: Rare Disease Leadership Tour Virtual Training and Networking: Illinois May 18, 2021 Global Genes and the EveryLife Foundation for Rare Diseases have worked together since…
Online Support Group for Adults with Cystic Fibrosis May 17, 2021 CFRI provides a monthly Online Support Group for Adults with CF, which is open to participants nationwide. The group…
The month of May is recognized as International Behçet's Awareness Month and May 20th is Behçet's Awareness Day. This is a special time for spreading awareness about Behçet's disease among…
The Virtual International Scientific Research Conference May 13-14, 2021 "Therapeutic Strategies for Large Protein Coding Genes in Usher Syndrome" This meeting will serve as a convergence of scientists and investigators…
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