The increasing penetration of digital technologies and the ubiquity of smartphones and the internet have transformed several spheres of our lives. Healthcare is no exception. With technological advances, it has…
Thinking about the year-end holidays brings up a kaleidoscope of images, and an array of emotions for me. And everyone else too, I imagine. There are the vivid memories of…
What if this Christmas season, God would appear to me and say, “Ask what I shall give thee,” as He did in a dream to King Solomon many years ago.…
Written by Martha Harlam My journey with Ataxia has been a life full of ups and downs. Ataxia has defined most of my life since it was first diagnosed in…
Written by Miron Hall Because CMT is a rare disease, it often receives less attention and funding than more common medical conditions. Without adequate resources, researchers struggle to develop effective…
Written by Adam Faatz Imagine not being able to breathe and spending nine days climbing the world's tallest freestanding mountain. That is my story, and that is my goal. Sixty-five…
At this time last year, I was 89 lbs and at the beginning stages of recovery from a year of IV and oral antibiotics for the treatment of Lyme disease.…
As someone struggling with chronic illness, you are probably no stranger to the stomach problems that come along with treatment or just a reality of your disease. By now, you might…
Written by Erin Sullivan I often ask myself, “How did I get here?” No one anticipates having a familial genetic mutation that can cause a terminal brain disease, but here…
Rare Community Profiles Rare Community Profiles is a Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families,…
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…
Written by Sara Tompkins NOTE: The perspectives voiced in this article are solely those of the author. The development of drugs for rare diseases has always been a complex and…
Editor's Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak…
Editor's Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak…
By Sharon King, Advocacy and Community Engagement Manager with Aldevron Living with the excruciating pain, debilitating fatigue, and other symptoms of sickle cell disease is challenging. Powerful painkillers and blood…
NOTE: The article was originally published as a blog post from the BHD Foundation a nonprofit patient advocacy organization. Birt-Hogg-Dubé syndrome (BHD) is a rare inherited condition associated with changes…
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…
An Intern’s Journey When my summer internship with Red Nucleus began, I had little familiarity with rare diseases and the life science industry. A distant relative of mine struggled with…
This press release was provided by the Sudden Arrhythmia Death Syndrome Foundation (SADS), a Patient Worthy partner organization. Key facts: ● Externally-led patient-focused drug development meeting (EL-PFDD) with FDA hosted…
Authored by Dr. Harsha Rajasimha, Founder and Executive Chairman, IndoUSrare. Co-Authored by Dr. Padma Rammoorthy, Medical Consultant, IndoUSrare. The diagnostic journey for patients with rare diseases often becomes a prolonged odyssey,…
Written by Jennifer Sills, Founder, CSNK2A1 Foundation If you know me, you know I have had an unconventional life, to put it mildly. More than anyone, I know that life…
NOTE: This story was provided through the CureGRIN Foundation, a Patient Worthy partner organization. Written by Lauren Williams Why Me, Why Not A question I struggled terribly with at the…
Note: These quotes and reflections are from members of the cystinosis community who were in attendance at the 2023 Cystinosis Research Network Family Conference which took place in Nashville, TN…
Congenital muscular dystrophy (CMD) affected individuals, Kelly Berger and Avery Roberts are making their voices heard. Together they hope to tackle misconceptions surrounding disability and give a loud voice…
Exercising with Ehlers-Danlos syndrome (EDS) is complicated. On one hand, you have to do it: exercise is the best treatment people with EDS have for an otherwise untreatable condition. On…
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