The Alagille Syndrome Alliance has launched its first ever awareness ribbon in support of the Alagille syndrome (ALGS) community! The multi-colored awareness ribbon is meant to represent the complex and uniquely…
Elmo and friends are here to help! - thanks to the good people of The National Association of Community Health Centers (NACHC)! For those who have never heard of the NACHC,…
Calling all members of the GNE Myopathy community! The Neuromuscular Disease Foundation (NDF) is hosting its 5th Annual Symposium on GNE Myopathy this August 30-31st at the University of California, Los Angeles. For…
Let's take a moment during these dog days of summer to recognize the SMA community during SMA awareness month! Spinal muscular atrophy (SMA) is a rare genetic disorder that causes…
Patient Worthy exists because there's just not enough visibility for the nearly 30 million Americans who have been diagnosed with disorders that are rare or have limited treatment options. So…
We're happy to introduce a new partner to Patient Worthy's mission of advocating for rare disease patients! The Aplastic Anemia and MDS International Foundation (AAMDS) supports, connects and educates patients, caregivers…
July 13th was Gastrointestinal Stromal Tumors Awareness Day! And that "13" has extra relevance. 5,000 Americans are diagnosed with Gastrointestinal Stromal Tumors (GIST) each year. That’s 13 people diagnosed each…
Meet Ruby, a beautiful 3 year old who was diagnosed with hypomyelination with atrophy of basal ganglia and cerebellum, or H-ABC, shortly after her birth. H-ABC is a type of leukodystrophy…
For anyone who has had to step into a doctor's office, you know the litany of emotions that run through your body. Anxiety, confusion, worry, exasperation - and to say…
Don't feel bad if you've haven't heard of hemochromatosis - that's why we are here! Hemochromatosis (also known as iron overload disorder) is a disease that is often under-diagnosed. It…
We here at Patient Worthy shine a spotlight on rare diseases, but these disorders often get overlooked by much of the media. So anytime a rare disease is discussed out…
July 30th is Gastroschisis Awareness Day! Gastroschisis is a rare birth defect of the abdominal wall. With this condition, the baby’s intestines stick outside of the body through a hole in…
People Magazine published an article about 20-year-old Kara Dunn who suddenly became paralyzed during a vacation to Spain, due to a rare disease she didn't know she had. Guillain-Barré Syndrome…
July is National Cleft & Craniofacial Awareness & Prevention Month! Cleft and craniofacial conditions affect thousands of infants, children, teens and adults in the US each year. Some are born with…
BuzzFeed News reported a few weeks ago about the tragic story of 16-year-old Sara Manitoski who died of Toxic Shock Syndrome: a rare condition with a very common source. Toxic shock syndrome…
Most of us are familiar with Parkinson's Disease. Parkinson’s disease is a central nervous system disorder affecting movement. It is a progressive disease and develops gradually, sometimes starting with a subtle tremor in…
Who needs a shot of feel good today?! Young Skye Savren-McCormick was diagnosed with juvenile myelomonocytic leukemia in 2016 and required a bone marrow transplant - and Hayden Hatfield Ryals…
When you think of arthritis, naturally the first thing that comes to mind is an older person - and with good reason, since artists is more common in people over…
For any John Oliver fans out there, you know his thing is deep-diving into topics of importance - from beauty pageants to international elections to failing American infrastructure - just…
July 13th is Gastrointestinal Stromal Tumors Awareness Day! And that "13" has extra relevance. 5,000 Americans are diagnosed with Gastrointestinal Stromal Tumors (GIST) each year. That’s 13 people diagnosed each day.…
June is Apert Syndrome Awareness Month! As summer sets in, let's take a moment to learn a little more about this rare disease and do our part to raise some…
Tomorrow is World Scleroderma Day! This date is an opportunity for anybody with an interest in scleroderma to join together as one united voice to shine a spotlight on a…
A pie to the face?! Yes, you heard right! Saturday, June 30th is Arthrogryposis Multiplex Congenita (AMC) awareness day! It is our duty here at Patient Worthy to shine a light…
Saturday June 23rd is Dravet syndrome awareness day! Dravet syndrome is a rare genetic dysfunction of the brain (epileptic encephalopathy). It begins in the first year of life in an otherwise…
Today is World Sickle Cell Day! Established in 2008, this international awareness day is aimed to increase public awareness and an understanding of sickle cell diseases, while educating those who may…
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.
