September will soon come to a close, but did you know that this month is also Ovarian Cancer Awareness Month? According to a story from MSN, Michelle Barrenechea, an EMT…
According to a story from MSN, Busola Omiyale's daughter Toriayooluwa was only nine months old when she could tell that something wasn't right. The girl had sickle cell disease, a…
Many rare diseases face issues when it comes to awareness, we know this. Low patient populations, minimal research, and little knowledge all contribute to this problem. One father aims to…
Recently, hundreds of people celebrated the 12th Annual Fara 5k in Providence, Rhode Island. This race was organized over a decade ago in an effort to raise money for Friedreich…
Written by Gina Baker This year Global Mitochondrial Disease Awareness week is September 19-25, but my family and I will continue to fight this battle for the rest of…
Living with an invisible illness can be difficult for a myriad of reasons, one of which is awareness. Those affected by vestibular disorders know this all too well. The word…
Tracey Shephard and her partner David Luffingham lost their daughter to meningitis and are now sharing their story as a warning to parents and medical professionals throughout England. The 11-year-old,…
September 7, 2021 will be recognized as World Duchenne Awareness Day. This day will be set aside in recognition of awareness surrounding Duchenne muscular dystrophy, a rare and debilitating genetic…
Taylor Wilson, a woman from Buffalo, is raising money for hemophagocytic lymphohistiocytosis (HLH) in honor of her late friend Paige Casillo. The two have known each other since they were…
Holden and Elliot have felt a surge of support from their community recently, as their preschool came together to celebrate them and show their love. Both boys were born with…
The month of August is recognized as Psoriasis Awareness Month, a time of year set aside to help spread awareness about the disease among the general public and in the…
The month of August has been recognized as Autoinflammatory Awareness Month since 2015. This event is centered on spreading awareness about autoinflammatory illnesses among the medical community and the general…
Ally Winter was diagnosed with short bowel syndrome when she was four years old. Now, she is 17 years old and working to raise awareness for rare and chronic illnesses.…
July is recognized as Juvenile Idiopathic Arthritis Awareness Month. Though arthritis is often considered an illness that is associated with old age, it is estimated that around 300,000 children in…
The month of June is here and every year it is recognized as Myasthenia Gravis (MG) Awareness Month. This is a time meant to help spread awareness about myasthenia gravis…
Pfizer Rare Disease is an approach taken by pharmaceutical giant Pfizer to develop treatments for rare and orphan diseases. In the past, the company has worked with the National Newspaper…
According to a story from ANCA Vasculitis News, the month of May is recognized as Vasculitis Awareness Month, a time for spreading awareness about vasculitis among the general public and…
The month of May is recognized as Myositis Awareness Month, a time to play your part in spreading awareness about myositis among the general public and in the medical community.…
The month of May is recognized as International Behçet's Awareness Month and May 20th is Behçet's Awareness Day. This is a special time for spreading awareness about Behçet's disease among…
The month of May is recognized annually as CF (Cystic Fibrosis) Awareness Month, a time meant to help spread awareness about the genetic disorder among the medical community and the…
The National Kidney Foundation has partnered with Bayer to launch and run the "Are You the 33%?" campaign, which intends to raise awareness about the heightened risk of chronic kidney…
According to a story from Fabry Disease News, the month of April is recognized as Fabry Disease Awareness Month, a time dedicated to spreading awareness about Fabry disease in the…
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…
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.
