What Huntington's Tells Us About Living Live Story Telling Showcase May 11, 2022 7:00 PM Join five people impacted by Huntington's disease as they share their inspiring stories about how…
MS Views Now: Gait Issues and COVID-19 with Multiple Sclerosis May 11, 2022 With guest presenter Ben Thrower, MD Learn about gait issues such as walking and balance problems, foot…
MS Neuro TV: Speech and Swallowing Issues That Can Affect People With MS May 10, 2022 Sign up for this program to learn about common speech problems that can occur…
Monthly Virtual Pilates Class Webcast May 9, 2022, 7-8PM ET Featuring instructor Bri Rhea, Pilates and Mindful Movement Instructor Click here to sign up.
Parenting Chronic Illness Webinar A web-based peer support group for parents of children living with health challenges led by Natalie Hopkins, MSW 2nd Monday of each month from 4-5pm This…
Kidz Klub With Mary Wootten, Program Associate Parents and caregivers! We invite you and your children to participate in an Oley Kidz Virtual Zoom meeting on Thursday, May 5, 2022 6:30-7:30…
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 SynGAP Research Fund: Evaluation of a Stem Cell Gene Therapy Approach for SYNGAP1 April 28, 2022 Speaker: Joe Anderson, Ph.D., M.A.S. Meet Dr. Anderson to hear about his…
Online Webinar: Can New Technologies and AI Benefit Long-Term Outcome in Pituitary Diseases? With Dr. Susan Webb April 27, 2022 Dr. Susan M. Webb holds the positions of Full Professor…
Cobalamin Disorders with Homocystinuria April 24, 2022 at 3:00 PM Come join us for our Cobalamin disorders with Homocystinuria virtual educational program. To sign up, click here.
Spring Low Protein Cooking Class Online April 23, 2022 at 2:00 PM Join HCU Network America and Chef Amber as she demonstrates for us 3 quick and easy low protein…
Tube Feeding/TPN Virtual Support Group with Mary Wootten, Program Associate We invite you to attend the Oley Tube Feeding/TPN Virtual Support Group for Patients & Caregivers on Thursday, April 14, 2022,…
Parenting Chronic Illness Webinar A web-based peer support group for parents of children living with health challenges led by Natalie Hopkins, MSW 2nd Monday of each month from 4-5pm This…
WA State Rare Chronic Illness Support Group A supportive group for WA state residents living with rare health challenges facilitated by Carrie Pope, MSW, LICSW 2nd Friday of each month,…
The SynGAP Research Fund: Severe Behaviors & Advocacy April 6, 2022 Speaker: Jackie Kancir, Policy Committee, National Council on Severe Autism 21-22 Scholar, Partners in Policymaking To register, click here.…
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…
Classical HCU Patient Panel Conversation: The Back to Care Journey Online Event April 2, 2022 at 12:00 PM The journey looks different for each Classical HCU patient. Join us for…
Webinar: Advances in our Understanding of the Management of MDS March 26, 2022 with Michael Keng, MD, University of Virginia, Emily Couric Clinical Cancer Center, Charlottesville, VA Attend this webinar…
Kidz Klub With Mary Wootten, Program Associate Parents and caregivers! We invite you and your children to participate in an Oley Kidz Virtual Zoom meeting on Thursday, March 24, 2022 6:30-7:30…
Classical HCU Parent-Caregiver Online Meetup March 19, 2022 at 10 AM Online meet-ups are an opportunity to connect parents & caregivers impacted by classical homocystinuria to with each other. Whether…
Parenting Chronic Illness Webinar A web-based peer support group for parents of children living with health challenges led by Natalie Hopkins, MSW 2nd Monday of each month from 4-5pm This…
WA State Rare Chronic Illness Support Group A supportive group for WA state residents living with rare health challenges facilitated by Carrie Pope, MSW, LICSW 2nd Friday of each month,…
Tube Feeding/TPN Virtual Support Group with Mary Wootten, Program Associate We invite you to attend the Oley Tube Feeding/TPN Virtual Support Group for Patients & Caregivers on Thursday, March 10, 2022,…
The SynGAP Research Fund: SYNGAP1 Service Dogs March 10, 2022 Speakers: Cecilia Anastos, SYNGAP1 Service Dog Trainer, and Virginie McNamar Meet Cecilia Anastos and learn about the service dogs she's…
February 28, 2022 is celebrated annually as Rare Disease Day. This is a major event for the rare disease patient community that helps spread awareness and shine a light on…
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.
