CHICAGO, July 19, 2018 – The Pulmonary Fibrosis Foundation (PFF) and monARC Bionetworks have partnered to create the mobile app, PF Health, for individuals living with pulmonary fibrosis (PF). PF Health, now available on Apple App Store (iOS 9.0 or…
Last month at the United Leukodystrophy Foundation’s Family Conference, special education teacher Sharon Bergfeld, MASE, LBSI, LBSII, led a break out session on Student with Disability/Schooling Advocacy. The session provided…
Happy Friday, everyone! We hope everyone's drinking water, wearing sunscreen, and taking a little time to relax this summer. As we get ready for the weekend, we've gathered four recent…
New pig models of Huntington’s disease have been developed, and they are expected to have several benefits compared to existing rodent models of the condition. Read the source article here…
As I’ve gotten older, I realize I’ve become more introspective, analyzing my relationships, emotions, spiritual well being, and mental health. While talking to others with rare diseases I’ve learned it…
Happy Independence Day Weekend! As the firework shows wind down, we want to wrap up the week with three great contributor stories, and one research update. First, we have some…
We’ve all heard it before; “don’t stress over the small stuff”, “stop and smell the roses”, “don’t worry about what you can’t control”. But what does it really mean when…
Happy end-of-June, readers! A lot of people are getting ready for the fourth of July right now. However, as a lot of the rare community knows, not everyone is able…
Researchers have been studying an experimental treatment for cystic fibrosis that is thought to be effective regardless of a patient's genetics. The research is still in the early stages, but…
Jim and Melea Martin are Outreach Partners with Future by Design, a family support group organized by the Cystinosis Research Network. Melea has cystinosis and Jim is her husband. We…
The National Society for Phenylketonuria (NSPKU) is holding their PKU Diet Challenge today. The diet challenge is specifically aimed at MPs (Members of Parliament in the UK-- aka, not me),…
Visit any pediatric ward in a hospital or medical center and you will see many pieces of medical equipment, but visit the OT and PT departments and you are in…
BOHEMIA, N.Y., June 25, 2018 (LGS Foundation) – The LGS Foundation is pleased to announce that the U.S. Food and Drug Administration (FDA) has approved EPIDIOLEX® (cannabidiol / CBD) for the…
Happy start-of-summer everyone! We're kicking off the summer with a wrap up on rare disease news this week. We have an article about a systemic mastocytosis study, and a clinical…
Happy Father's Day weekend! While Father's Day can be complicated in a rare family, rare parents deserve a round of applause. This week we have a Father's Day tribute from…
The below article was originally published on June 14th, 2018 in Miracle Flights Newsletter, The Co-Pilot, and is being republished here with permission. Rebecca is big sister to 10-year-old Amanda…
Click to read parts one and two of Joanie's story. Since 2012, when I left my job as an educator, I have tried many different modes of medical therapies. I'm…
I am a caregiver mom to my two special needs, young adult, rare disease kids. I am also a recent widow; previously, I was a caregiver wife to my very…
Before I start, I want to remind everyone that I am not your doctor or a halfway adequate replacement for your doctor. If you find that you're fainting regularly-- whether…
To read part one of Joanie's story, click here. In 2014, I developed excruciating back pain and eventually the doctors found I had two spinal cord tumors. One was on…
At age 60, I am learning to love and accept the woman I am right now. This is long overdue: I never envisioned a life walking with a white cane…
As a 26-year-old working mother, all of life seemed in place. A rewarding job, a precious baby, and a supportive husband filled the hours and made for great memories. Days…
Happy Friday everyone! This was a week with a highlight on research: we cover the state of ME/CFS information at the moment, an exciting treatment approval for people with ulcerative…
In 2017, a group called “Traveling CVS Warrior” was created on Facebook. This is a group I created that sends a stuffed animal aka a Cyclic Vomiting Syndrome (CVS) Warrior to…
This morning, I was on an elliptical before work, reflecting on the life-long journey I've been on with exercise and Ehlers-Danlos syndrome. I hated PE class as a kid. I…
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