Our mission is to amplify the rare condition voice. One of the ways we achieve that is through collaborations across the community, from patients and caregivers to industry leaders in treatment research and development. To learn more, click here.
There was rarely a quiet moment in my childhood home as the youngest of seven kids in a bustling, loving family in Pittsburgh, Pennsylvania during the 1970s and 80s. My…
Patient Worthy is fortunate to be partnered with the Glanzmann Research Foundation, Inc. and proud to present Joy's story of living with Glanzmann Thrombasthenia (GT). To learn more about the…
Patient Worthy is so grateful to our partners IPPF-The International Pemphigus & Pemphigoid Foundation and for the change to share Halima's story. IPPF's mission is to improve the quality of…
Patient Worthy is honored to present this story by way of the GACI Global. GACI Global is a nonprofit organization whose mission is to connect families affected by Generalized Arterial…
Patient Worthy is grateful to present this story written by Bud Hager by way of the Courageous Parents Network. CPN is a nonprofit organization that has oriented, equipped and empowered…
Only about 50% of those born with GACI survive. Patient Worthy is grateful to GACIGlobal for the ability to share Sienna's Story. GACI Global is a nonprofit organization whose mission…
SLC13A5 Epilepsy affects not just individuals, but friends and families as well. The following perspective, as told by Amber, mom to TESS Superhero Rowan, aims to give insight into what…
Hi everyone, my name is Dwayne; I am 57 years old. I was diagnosed with Late Onset Pompe disease (LOPD) in November 2018 when I was 50 years old. I…
Patient Worthy is grateful to present this article by way of the CureGRIN Foundation. CureGRIN is a foundation founded and run by parents who are committed to improving the lives of people…
Patient Worthy is honored to be able to share Zoe Ridgeway's story by way of theBHDFoundation.org. Zoe's story was shared for Rare Disease Day 2025 and the BHD Foundation believes…
Patient Worthy is honored to bring you Levi’s story courtesy of our partners Miracle Flights. Miracle Flights is a non-profit organization that provides pediatric patients and their families free commercial…
Nothing about meningitis is fair. In mere moments it can devastate lives and destroy families. It can take away dreams and shatter plans. These factors make marking my 20th year…
"You have cervical dystonia", said my beloved family doctor of 20 years. He was almost exuberant, relieved to have finally uncovered the mystery of my severe neck pain, head tremors,…
For Part 1 of Jeremie's story, click here. I just want to share my rare disease story today! I used to be a theater actor and a performer on stage.…
I was diagnosed in 2021. It all started when I was hospitalized for about 3 weeks due to high blood glucose - Hyperglycemia. During my stay in the hospital, my…
Madrigal today released their first report of results following FDA approval of Rezdiffra for the treatment of NASH in April. Their results are on track according to company forecasts but…
Imagine that your loved one is diagnosed with a rare disease. The first thing you do is to go to the internet to understand what you can about this disease…
Acknowledgment: This patient story is sponsored by Ipsen Biopharmaceuticals, Inc. and is promoted through the Patient Worthy Collaborative Content program. We only publish content that embodies our mission of providing…
By: Erin Santos-Primis, Mom to Isabella and Executive Director of the Isabella Santos Foundation Starting a nonprofit in honor of a loved one lost to a tragic disease is often…
Acknowledgment: This patient story is sponsored by Chiesi USA and is promoted through the Patient Worthy Collaborative Content program. We only publish content that embodies our mission of providing relevant, vetted,…
Acknowledgment: This story is sponsored by Neurocrine Biosciences and is promoted through the Patient Worthy Collaborative Content program. We only publish content that embodies our mission of providing relevant, vetted,…
Acknowledgment: This story is sponsored by Otsuka America Pharmaceutical, Inc. and is promoted through the Patient Worthy Collaborative Content program. We only publish content that embodies our mission of providing relevant,…
Acknowledgment: This story is sponsored by Otsuka America Pharmaceutical, Inc. and is promoted through the Patient Worthy Collaborative Content program. We only publish content that embodies our mission of providing…
Patient Worthy is working with a partner agency who is looking to engage with patients living with Shingles. If chosen, participants will have the chance to take part in a…
Patient Worthy is working with a partner agency who is looking to engage with patients living with Hereditary Angioedema (HAE) who have reoccurring symptoms, more than 2 times a month.…
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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.
