Three people in the state of Indiana live with Niemann-Pick disease type C (NPC), and Audrey Mischler is one of them according to WTHI-TV 10. She was diagnosed very recently,…
MSN News recently interviewed Dr. Laxmikant Palo, with the conversation focusing on the situations of people living with rare diseases in India and how to improve them. According to Dr.…
Back in October, the International Pemphigus & Pemphigoid Foundation (IPPF) took another step in their plan to learn from and work with patients to increase awareness for pemphigus. They held…
The month of March is recognized as Cerebral Palsy Awareness Month, a time that is dedicated to spreading awareness among the general public and the medical community about cerebral palsy,…
Julia's Wings Foundation is gearing up for the Operation Wear Red Campaign in an effort to raise awareness for the rare blood disorder aplastic anemia. From the first of March…
Learning about rare diseases is one of the first steps towards advocacy. If you or a loved one are affected by cold agglutinin disease (CAD), you may want to get…
Elloise Charles has set out on a mission to raise awareness and money for progressive supranuclear palsy (PSP) after her father was diagnosed. His journey to diagnosis was similar to…
The aHUS Alliance has taken on a new project to raise awareness for atypical hemolytic uremic syndrome (aHUS) and the needs of the patient community, according to aHUS News. The…
Tara Johnston, a resident of London, England is now twenty years old but still coping with severe acne. Tara interviewed with MyLondon in an effort to raise awareness and share…
Grant Bonebrake was diagnosed with Alport syndrome at age 12. Since then, he has gone on to advocate for not only Alport syndrome patients, but the rare disease community as…
Pancreatic cancer is a rare but severe cancer, and it is often difficult to diagnose until it has advanced. When you combine this with a lack of knowledge and awareness…
Since 2012, the nonprofit organization Dysautonomia International has organized Dysautonomia Awareness Month. With the goal of spreading awareness of the condition in the medical community and among the general population,…
October is Rett Syndrome Awareness Month, and even though the pandemic has changed the way that we celebrate it, there are plenty of ways to get involved! Rettsyndrome.org has organized…
This month is Charcot-Marie-Tooth (CMT) Awareness Month. Due to COVID-19, there cannot be any of the typical events, but that doesn't mean there's nothing you can do. From a virtual…
January 24th is Moebius Syndrome Awareness Day! Let's take a deeper dive into what Moebius Syndrome is and what we can do to push awareness on this day (and all…
October is Gaucher Disease Awareness Month! The National Gaucher Foundation (NGF) has some wonderful resources that can come in handy for the Gaucher patient community. Let's take a look below!…
September 25th is International Ataxia Awareness Day! The National Ataxia Foundation (NAF) has great resources to help spread the word and show our solidarity for the Ataxia patient community; on…
September 24th is Familial Hypercholesterolemia (FH) Awareness Day! Let's take a closer look at FH, and how we can help make this day productive for the FH -- and rare…
July is Gastroschisis Awareness Month! Thanks to the great work of the Avery's Angels Gastroschisis Foundation, there are a number of ways and resources to make the most out of…
June is myasthenia gravis awareness month! Myasthenia gravis (MG) is characterized by weakness and rapid fatigue of any of the muscles under voluntary control. It's caused by a breakdown in…
May is Cystic Fibrosis (CF) awareness month! CF is one of the more devastating rare diseases in the community, often affecting children and young people. So let's be extra mindful…
May is Myositis Awareness Month! Myositis is the inflammation or swelling of the muscles. There are two primary kinds of myositis: Polymyositis, which causes muscle weakness, usually in the muscles closest…
Thursday May 16th is HAE Day, when we observes the hopes, struggles, and resilience of the Hereditary Angioedema (HAE) patient community! What is HAE? “Angio” means pertaining to blood vessels, and…
May is Cystinosis Awareness Month! During the month (and all year long!) we strive to bring together the cystinosis patient community and their families -- and the Cystinosis Research Network's…
When my family friend's new girlfriend came to meet us, she made the best impression with her positive attitude and general ease in interacting with a large (and probably overwhelming)…
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