This year, The International Advocate for Glycoprotein Storage Diseases (ISMRD) has moved their International Conference from the US to Rome, Italy! The ISMRD is a non-profit who aims to be…
A recent report from the Food & Drug Administration reveals renewed efforts for the treatment of one of the rarest forms of non-Hodgkin's Lymphoma, Mantle Cell Lymphoma. Due to promising advancement…
The first story that comes to Quentin's mind about a turning point in his life is about his attendance at a school for the blind. When Quentin lost his vision…
I like nonsense, it wakes up the brain cells. Fantasy is a necessary ingredient in living, It’s a way of looking at life through the wrong end of a telescope.…
Welcome back Patient Worthians! We are back this week from the 2017 Global Genes Rare Advocacy Summit. Did you attend? If so, what did you learn? Let us know here. This…
The Pulmonary Fibrosis Foundation (PFF) is hosting their biennial summit this November! Pulmonary fibrosis covers 200 different conditions that include sarcoidosis, IPF, scleroderma and other rare diseases. The conditions are characterized by…
The Cystic Fibrosis Foundation (CFF) is hosting the North American Cystic Fibrosis Conference (NACFC) in Indianapolis, Indiana. The CFF is an amazing non-profit that aims to cure cystic fibrosis while…
Good news for patients suffering from neurological disorders that may have taken away their ability to walk. Multiple sclerosis, cerebral palsy, stroke and other diseases can often lead to paralysis.…
Announcement is via the Child Neurology Foundation, republished here with permission: NOMINATIONS NOW ACCEPTED FOR: IS HOPE AND IS HEROES AWARDS The Infantile Spasms Action Network will once again sponsor Infantile…
Happy Friday Patient Worthians! It's the week of the 2017 Global Genes Advocacy Summit, and we have the details for you. First, we have a PW contributor's take on conferences,…
Day two of Global Gene's 2017 Patient Advocacy Summit started out with a fire side chat with Christopher Austin, MD, the Director of the NIH's National Center for Advancing Translational…
I thank my mother for exposing my sister and I to the chicken pox at the same time as kids because I don't even remember having it. And while shows…
At the 2017 Global Genes Advocacy Summit, one of the break-out sessions discusses the drug development process. But it goes beyond this to educate us, the patients, on how imperative…
We have written about the anatomy of an HAE attack before. It’s a living nightmare. HAE is a rare genetic disorder. It is characterized by recurring, unexplained, severe swelling underneath…
Patient Worthy is fortunate enough to be at the 2017 Global Genes Rare Patient Advocacy Summit this week. While the personal stories that have been shared are highlights of the…
Parkinson’s disease is a degenerative movement disorder of the central nervous system that insidiously forms, even starting subtly with a single tremor, progressing into slurred speech, loss of balance, and…
Everyone seems to have Epstein-Barr in my family. My mom, who has celiac disease and sciatica, and my sister, who has lichen sclerosis. Given that typical MDs don't seem to have…
It can be pretty difficult to live in a world where very few people understand your rare disease life. Thankfully, there is a way to find others through the internet,…
Since this is my first contribution to Patient Worthy, I thought I would spend some time writing about the process it took to receive my diagnosis of idiopathic pulmonary fibrosis…
Norway scientists Suchi Mittal, et al. have found compounds that reduce levels of a key gene that increases the risk of developing Parkinson's disease. Parkinson's disease is a degenerative central…
You know the best thing about a 3-day weekend? A 4-day work-week! We hope you had a fun and safe Labor Day Weekend here in the states. How do you…
Duchenne muscular dystrophy is most common in males, and is characterized by muscle weakness that progresses over time. Onset is as early as three years of age and the life…
September is National Blood Cancer Awareness Month and September 15th is World Lymphoma Awareness Day. To find out more, check out the Lymphoma Research Foundation (LRF). Not only does this…
Rare diseases like ALS and SMA cause damage to motor neurons. Often, these conditions lead to death, in part because muscles in the chest are wasted away and the patient…
When I first read this story in Fortune about the Zika Virus potentially being used to treat a rare form of deadly brain cancer called glioblastoma, I immediately thought of…
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