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…
International Fibrodysplasia Ossificans Progressiva (FOP) Awareness Day is recognized each year on April 23rd. This is a time for spreading awareness about this rare disorder among both the general public…
According to a recent article, last week was Porphyria Awareness Week, a week dedicated to recognizing and uniting those who are a part of the porphyria community. Porphyria Porphyria is…
Cushing's disease, like all other rare diseases, benefits greatly from increased awareness and advocacy. Because there are fewer patients and affected individuals, their voices need to be louder in order…
Since 2015, April 6 has been recognized as Bohring-Opitz Syndrome Awareness Day, a time to spread awareness about this rare disease among the medical field and the general public. The…
According to a recent article, Canadian actor Cameron Mathison opened up about dealing with Legg-Calve-Perthes disease throughout his childhood. Perthes Disease Perthes disease is a condition that affects the hips…
Walks are a great way to raise awareness and money for a cause, and they're also good for exercising and spending some time with friends and family. Recently, the Southwest…
This Saturday, March 12, marks Narcolepsy Awareness Day, also known as Suddenly Sleepy Saturday. The Narcolepsy Network aims to raise awareness and urges everyone to do their part to advocate…
According to a story from PR Newswire, Myeloma Action Month takes place every year during the month of March. This year, the International Myeloma Foundation (IMF) is organizing around the…
According to a recent article, a cyclist who was closely affected by alpha-1 antitrypsin deficiency (A1AD), is biking across Australia with his good friend to raise awareness and money for…
A tragedy in Deer Creek, Oklahoma has pushed bacterial meningitis into the spotlight after it claimed the life of Nathan Rogalski. Nathan, who was a star athlete within his community,…
HTT gene mutations cause Huntington’s disease, a rare and inherited neurological condition. Those with a family history of Huntington’s disease may choose to undergo genetic testing to learn more, though…
Misconceptions exist about many rare diseases. In fact, the efforts of many advocates are focused on education and dispelling these myths. Recently, an article in the Hindustan Times did just…
February 1st marked the beginning of Turner Syndrome Awareness Month, which is an entire month dedicated to learning about this rare disease and raising awareness. The Turner Syndrome Foundation (TSF) has…
The week of February 7-14, 2022 is being recognized as Congenital Heart Defect Awareness Week, a time to help spread awareness about congenital heart defects. While individual heart defect conditions…
For the last seven years, the Global Genes Rare Compassion Program has been providing medical students with an opportunity to bond with patients and families who have been diagnosed with…
The World Health Organization (the WHO) announced World Leprosy Day which this year will be celebrated on January 30th. The theme of the celebration is “United for Dignity.” It…
It’s January 2022 – have you checked on your thyroid health lately? If not, consider learning more about thyroid disease and what your thyroid does for the body. Why…
According to a recent article, a little boy’s parents are bringing awareness to the rare genetic disorder called uncombable hair syndrome after he was diagnosed at just 14 months old.…
Written by Dr. Lauren Steddum So far in 2021, more than 54,000 people have been diagnosed with oral cavity and oropharyngeal cancer and nearly 11,000 people have died of the…
November 1st marks Lennox-Gastaut syndrome (LGS) Awareness Day, which is dedicated to patients living with this severe epilepsy syndrome. The LGS Foundation has organized this day to celebrate the resiliency…
A lack of awareness is a problem that many rare diseases face. Small patient populations, limited research, and other factors all play a role in this issue. Luckily, there are…
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