Happy Friday! This week, we have a story that might break your heart about a woman who battled cystic fibrosis. But we also have a story that might inspire you about a…
If you attend a conference of rare disease families, you might not even notice that many of those who are helping out with all aspects of making sure that everything…
Jon Milne is on a quest to race across the seven seas to help raise awareness of rare disease! Jon has always been a keen sportsman, aged 30 he had…
Happy August Patient Worthy Peeps! This week, we have some awesome posts to keep you up-to-date on some of the latest rare disease developments. There's news on a hopeful possible…
Klippel-Feil Syndrome Awareness Day began five years ago, when a small group of people decided a specific day each year should be set aside, to help the KFS community speak…
Welcome Back to Editor's Choice! The end of the week is finally here, and we have some reading material for you. First, we have an awesome story of a CF…
I’ve dealt with the medical community in a number of ways throughout my life, from my first clerical job in a hospital, to numerous positions in hospitals in different states.…
If you passed me as a stranger on the street, you would never guess that there was a point in time that I road tripped around the U.S. and picked…
It's getting hot out there... So you may as well read some news while staying cool inside if you're in the US! This week we have news on Senator John…
Happy Friday! How's the the sweltering heat treating you all (if you're on the east coast of the US, that is)? Hoping you are keeping cool! In the meantime, check out…
WHEW! That week was short, wasn't it? We hope you had an awesome Independence Day Weekend in the US, and Canada Day in our neighbors to the north. This week,…
I was fortunate to have had optimistic role models during my formative years. They taught me that glass wasn't either half empty or half full, because the glass can be…
As a kid, I always had a pretty good hold on life. Despite my father being deployed during my formative years, I played sports, made good grades, and had great…
Happy Independence Day Weekend Everyone! We have the latest update on the UK cystic fibrosis fight for Orkambi. We also have a great contribution on the importance of taking care…
TGIF Patient Worthians! This week we have promising results on promising results. First up is news on a Dravet syndrome treatment. Second is a Lupus Nephritis drug in the works! Third…
At any time of the day, in any hospital, a nurse is giving instructions to a parent, spouse, child, sibling or friend of a patient, as to how to take…
In collaboration with the Hereditary Neuropathy Foundation (HNF), Patient Worthy held an essay contest for tickets to a Charcot-Marie-Tooth disease event. We asked members of the Charcot-Marie Tooth (CMT) community to tell…
Due to a rare disease affecting many parts of her body, my oldest daughter, Kelley, saw a number of different doctors in a number of different locations. I clearly remember…
Happy Father's Day Weekend Patient Worthians! This week we have an amazing essay written by CMT Warrior Sarah Magno regarding her personal experience overcoming rare disease obstacles. We also have some…
BrainStorm Cell Therapeutics Inc. is looking to begin producing NurOwn® adult stem cells for their phase III clinical study on ALS patients. The therapeutic company is hoping that the development of…
Recently, when another rare mother and I were discussing the many trials that rare disease families face, we agreed that we wished that the general public would understand how vulnerable…
At Patient Worthy, we’re all about rare diseases, and the focus of almost all our posts is the patient. Today, I want to shine a bright, white light on all…
In collaboration with the Hereditary Neuropathy Foundation (HNF), Patient Worthy asked members of the Charcot-Marie Tooth (CMT) community to tell us their stories, in hopes of inspiring everyone in the rare community…
Orkambi (ivacaftor/lumacaftor) is the second precision medicine to be licensed for use in the UK by people with cystic fibrosis. The catch? It is not currently provided by the National…
Welcome to Friday Patient Worthians! This week we have stories on cystinosis and super moms with sickle cell! Additionally, we have a patient story on dystonia and an upcoming event. Lastly, an…
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.
