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,…
According to a recent article, investigators have proposed a checklist that will aid in determining the strength of potential gene-disease relationships for rare disease. The Need It has already…
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,…
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…
Definitive Healthcare launched a survey in November 2021 to help physicians, researchers, and the rare community understand what the biggest challenges are for providing a rare disease diagnosis and treating…
To be able to pursue your dreams and passions is nothing short of empowering. But for many people within the rare disease community, there are barriers to pursuing our goals.…
On March 24, 2022, the Rare Disease Legislative Advocates hosted its monthly webinar to provide updates on legislation and public policy that is relevant to the rare disease patient community.…
According to an article recently published in Business Wire, Global Genes, a leading advocacy group, released a progress report on rare diseases. The report includes data and studies as…
Note: this story was originally published by HAE Junior, a Patient Worthy partner Interview with Malena Vetterli from the European Reference Network (ERN-RITA) for rare immunodeficiencies, autoinflammatory and autoimmune diseases.…
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…
Currently, 95% of rare diseases don't have an effective treatment. Progress is being made, but there is just so much ground to cover in rare disease research. Studying rare diseases…
Bonair Daydreams, an inspirational cardline, was founded by a woman who understands human emotions and exactly what words to say in every moment of joy, grief, pain, and hesitance. 27…
Want to learn about scientific topics without needing a PhD? Check out the Science Simplified blog from TESS Research Foundation! Dr. Tanya Brown, PhD, works with researchers to make science…
The war on opioids inadvertently became a war on severely ill patients. The "war" had to be declared. There were reactions from all fronts to the realization that deaths rose…
Patient Worthy is a partner of Personalize My Medicine, which is dedicated to a patient-focused approach to medical innovation and research. PMM can help you organize a personalized approach to…
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,…
On February 23, 2022, the National Organization for Rare Disorders (NORD) held a webinar titled "Advancing Equity in Rare Healthcare." The program was organized in collaboration with the Rare Disease…
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…
According to a recent article, Trialbee and ERGOMED have partnered to become the platform for patient recruitment for their new Rare Disease Innovation Center. Trialbee Trialbee is the leading platform…
Nicole Burns’ great grandfather left her his house and a portion of his 100 acres. According to a recent article in STAT News, Nicole also inherited her great grandfather’s heart…
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…
Policy regarding many topics varies throughout America as one moves from state to state, and rare disease policy is no different. Because of this, getting a holistic view of where…
The question plaguing the geneticists about the Burns family was: how have they survived? In 2016, several geneticists theorized that certain people may have a good-gene bad-gene scenario taking place…
A popular book by Dr. Seuss that is often given to graduates is Oh The Places You'll Go. Now, suppose Dr. Seuss had entered the rare disease world. Perhaps he…
© Copyright 2024 Patient Worthy
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.
