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…
1. Start planning your fundraiser early. Logistics take time. 2. Know your audience. There are a million good causes in the world to donate to. You have to know who…
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…
In a study conducted by Ph.D Ludwine Messiaen, the professor of genetics at the University of Alabama at Birmingham, says that there has been progress made to help aid those…
According to a story from Rare Disease Report, Nichol Kirby, who was diagnosed with acute intermittent porphyria in 2015, faced an arduous path to her diagnosis. Her constant pain, which…
We often hear the term noncompliance when talking about patient-doctor relationships for individuals with hemophilia. In essence, it means the hemophilia patient hasn’t done what the doctor has asked them…
According to a story from Mirror, the advocacy group Patient Concern is calling out the UK's National Health Service (NHS) for failing to treat cancer patients appropriately. The claims are…
According to a story from abc.net.au, ever since Massimo Damiani was first diagnosed with a leukodystrophy, his parents, Sally and Stephen, have been committed to promoting research efforts and new…
According to a story from pm360online.com, the clinical stage corporation Epizyme recently released detailed results from the Phase 2 trial of its leading investigational candidate, tazemetostat. This drug is in…
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.
