During the National Institutes of Health (NIH) Rare Disease Day at NIH event, a panel was held titled "From Kitchen Tables to Changing Paradigms — Advocacy as a Driving Force…
Supporting the development of my children's talents has returned the joy of life to our whole family - in spite of HAE diagnosis and other obstacles in life. As you…
The National Institutes of Health (NIH) held its annual Rare Disease Day event on March 1, 2021 this year. This event showcases groundbreaking research, amazing rare patient stories, and more.…
As part of ongoing events surrounding Rare Disease Day, which is officially recognized on the last day of the month of February, Patient Worthy attended sessions of the 8th Annual…
By: Malika Abrams I was eight years old when I found out that I was sick. After spending a beautiful summer day at the community pool with my parents, brothers,…
Ray Jordan and Cyndi Segroves were born thousands of miles away from one another; in fact, they grew up in different countries. Cyndi is from the US and Ray is…
Note: This guide was originally published on cysticfibrosis.com Written by Imogene The cystic fibrosis community is at high risk for serious complications from COVID-19. Through a recent survey of the…
According to a story from ktvl.com, seven year old Emma Suetta, of Etna, California lives with a rare disease called cystinosis, and she is doing her part to help find…
Arteriovenous malformation (AVM) is a rare disease that causes blood vessels to clump together within the skull. It can lead to aneurisms, strokes, or early death. However, surgery is possible…
According to a story from wavy.com, Cherie Reenee Brown was a prominent political organizer and activist in the city of Portsmouth, VA. But on New Years Day 2021 she passed…
By Tom Seaman If you are like me and probably most people, in today’s busy world it is a big challenge to be still and mentally at ease. This is…
Mitochondrial Disease Mitochondrial disease is a rare and progressive condition that currently does not have a cure. The mitochondria is responsible for providing energy to the body. This energy is used…
While 2020 was a challenging year for many people in the US, the life of three year old Lelani was in particular disarray. She was in and out of the…
According to a story from wndu.com, a fundraiser that was held in Berrien Springs, Michigan, is helping to raise money for Carter Sheline, who recently graduated from high school and…
Rebecca Newsome lives with a rare form of cancer called gastrointestinal stromal tumors (GISTs). In this story, she talks about her experiences as a patient in a question-and-answer format. What…
Every year since 1954, the final Sunday in January has been recognized as World Leprosy Day. The day was first established by Raoul Follereau, a French writer and philanthropist. The…
On January 21, 2021, the Rare Disease Legislative Advocates (RDLA) hosted an online webinar that focused specifically on the subject of advocating for rare disease health policy at the state…
Written by Gina Glass Like any parent of a child with a rare disease, my world was turned upside down when my daughter, Gia, was diagnosed with sickle cell disease…
Veer Basal, age 14, first started showing signs of Friedreich's ataxia when he was around ten years old. The first sign that something was wrong was when Veer began to…
As reported in MSN, Duane Zingale explained that one aspect of being born with Treacher Collins syndrome is that you’re extremely memorable. Duane was born without ears or cheekbones. He…
Landon Groves was diagnosed with Kabuki syndrome, a rare multisystem disorder, and leukemia soon after his birth. Because of these conditions, his family faces hefty medical bills. His community has…
CBC News recently interviewed Amanda, Bradley, and Brad Bright, a close-knit black family living in Nova Scotia. The Brights explain that working their way through initial diagnosis and treatment…
My name is Megan and I live with acute hepatic porphyria (AHP). My health journey began with the arrival of puberty. I started to experience terrible nausea and abdominal pain…
25 year old Tylia Flores wrote on her blog that as a person with cerebral palsy, there are a lot of not so thoughtful ‘compliments’ that may not be interpreted…
Super T’s Mast Cell Foundation was created in 2015 by my daughter Taylor upon receiving her diagnosis of mast cell activation disorder. After traveling over twenty hours to consult with…
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