October 23 is recognized each year as Kabuki Syndrome Awareness Day, a time to help spread awareness about this syndrome among the general public and in the medical field. Kabuki…
October 5 is recognized each year as Progressive Familial Intrahepatic Cholestasis (PFIC) Awareness Day, a time to help spread awareness about this rare disease among the medical field and the…
September 24, 2022 will be recognized as Familial Hypercholesterolemia (FH) Awareness Day, a time to spread awareness about this under-recognized condition among the general public and in the medical field.…
September 7 is World Duchenne Day, a day to help spread awareness about Duchenne muscular dystrophy among the general public and in the medical field. In recognition of this day,…
Did you know that July 23 is World Castleman Disease Day? Each year, this day is dedicated to bringing awareness to those who are affected by Castleman disease, including patients, family…
July 1, 2022 was World Bronchiectasis Day, a day dedicated to highlighting the number of cases of bronchiectasis that are growing rapidly. According to a recent article, a number…
Every year, June 30 is marked as Arthrogryposis Awareness Day. It was created by Ani Samargian, the founder of Arthrogryposis Multiplex Congenita Support Inc., back in 2005. The day is…
June 30, 2022 will be recognized as Arthrogryposis Multiplex Congenita (AMC) Awareness Day, a time to spread awareness about arthrogryposis multiplex congenita among the general public and in the medical…
At just two days old, Leita’s son Glyn started having infantile spasms. For the next sixteen years, Glyn’s seizures worsened. Leita also had two other children – twins named Asha…
During this month, the Dravet Syndrome Foundation (DSF) organizes a variety of activities and resources to help raise awareness for Dravet syndrome, a rare form of epilepsy. They make it…
According to a story from Scleroderma News, June is recognized as Scleroderma Awareness Month, a time for spreading awareness about scleroderma among the general public and in the medical field.…
Rhiley Fitch just turned five years old on May 10th. She is diagnosed with a condition called apraxia, which is a rare motor speech disorder. Rhiley is determined to learn…
Mandy Maysey is a 49-year-old mum living in Australia with her three children, who are all coping with an unpredictable disorder. Tourette syndrome (TS) is a neurological disorder involving repetitive…
Patients are advised to look for and report symptoms of a mysterious liver disease that has recently caused the death of three Indonesian children. Newsmax’s most up-to-date reports state that…
Tourette Syndrome affects one million Americans. 2022 is the Tourette Association of America's 50th Anniversary, and to celebrate, you can get involved in Tourette Syndrome Awareness Month from May 15th…
According to a recent article, the parents of Anyiah Johnson are working to raise awareness for their daughter’s rare diagnosis of autoimmune encephalitis. Autoimmune Encephalitis Autoimmune encephalitis (AE) is a…
The journey to a rare disease diagnosis can be long and daunting - and, in some cases, may mean facing a few misdiagnoses first. According to KTVB7, this is what…
Sophie had a wish, and this month her mother is going to parliament to fulfill that wish. Sophie’s death has brought about the first House of Commons debate on childhood…
According to a recent article, 82-year-old Veronica Jones is working to break the laziness stigma that surrounds a myalgic encephalomyelitis diagnosis. Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) Myalgic encephalomyelitis (ME),…
We’ve reached the month of May, and you know what that means – it is Guillain-Barre syndrome (GBS) and Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) Awareness Month! During this month, the…
It's time to raise awareness for and celebrate the patient population that lives with eosinophilic disorders. From May 15th until the 21st, the American Partnership for Eosinophilic Disorders (APFED) is…
According to a story from ALS News Today, around 5,000 people get diagnosed with amyotrophic lateral sclerosis (ALS) annually. In addition, costs of treatment for patients average $250,000 out of…
It is believed that in 1916 a German doctor named Brachmann first identified a patient with symptoms of a disease later known as Cornelia de Lange syndrome. Then in…
According to a recent article, the sudden death of Cavan woman, Leah Farrelly, shocked her family, friends, and community after living with Long QT syndrome for 9 years. Long QT…
Raising awareness is extremely important when it comes to rare diseases. After all, rarity typically results in minimal public and medical awareness. That's why patient communities and other dedicated individuals…
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