June 30th is World Pneumothorax Day and this year we are urging all doctors to ask about family history if a patient presents with a spontaneous pneumothorax. This one…
I've known some wonderful fathers throughout my life. My own father was a gem. My siblings agree. However, it was not until I became immersed in the rare disease world…
June 17th is International CDKL5 Day. During the month of June let’s tag every day with a reminder to those in the CDKL5 community to promote collaboration and fundraising.…
Written by Lacey Woods From a young age, I knew I wanted to be a mother, to have biological children and also to adopt. This desire stayed with me throughout…
According to a story from CBS News Boston, Scarlett is just six years old and was recently hit with a devastating diagnosis: Batten disease. Unfortunately, very little can be done…
John knew from an early age that he not only loved music but had confidence in his musical ability. However, there was another very troubling issue in his life. John…
The month of May is recognized as Prader-Willi Syndrome (PWS) Awareness Month, and May 27th is International PWS Day. This is a time to spread awareness about this rare disease…
Written by Libby Wilson- Mommy, Living with Stage IV Breast Cancer Dear Violet - Before I met you, I never loved someone with every morsel of my being. I never…
Lyme disease is an illness caused by Borrelia burgdorferi (B. burgdorferi) bacteria that is transmitted through the bite of an infected deer or western blacklegged tick. If you live…
May 7, 2023 will be recognized as Cystinosis Awareness Day. This will be a day to spread awareness about the rare disease cystinosis among the general public and the medical…
On April 26th, I had the honor of speaking at the American Brain Foundation’s Commitment to Cures fundraising dinner during the American Academy of Neurology annual convention in Boston. I…
Written by Salem Taylor My name is Salem, I’m 43 years old, live in North Carolina and have hyperkalemic periodic paralysis. Growing up as a tall, awkward home-schooled kid was…
On April 23, 2023, people around the globe will celebrate Fibrodysplasia Ossificans Progressiva (FOP) Awareness Day. April 23 marks the 17th anniversary of when scientists shared that they had…
April 19, 2023 will be recognized as Global Porphyria Day, a time to spread awareness about porphyria, a rare disease, among the general public and the medical field. This year,…
Rare Community Profiles Rare Community Profiles is a new Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their…
Rare Community Profiles Rare Community Profiles is a new Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their…
Caring is Sharing and Getting Involved. On April 17th Landmarks all over the world will be asked to ‘Light It Red’ in honor of Hemophilia Day. The theme of this…
Written by Everett Alms Before I turned 15 years old, my parents had already taken me to see the Grand Canyon, NASA’s Kennedy Space Center, Disney World, Universal Studios, and…
At Patient Worthy, we seek to partner with patient advocacy and other related organizations in order to collaborate and promote one another's activities. Recently, we have begun a partnership with…
April 8, 2023 will be recognized as Cushing's Awareness Day, a time to help spread awareness among the general public and the medical community about Cushing's syndrome and Cushing's disease,…
According to a story on msn.com, Alijah Cunningham is living with the rare disease Apert syndrome, resulting in the bones of his toes and fingers fusing together. Now three years…
On March 9-10, 2023, Dynamic Global Events hosted the virtual Global Innovation in Patient Advocacy conference. This event was geared towards various stakeholders in the rare disease space and was…
Rare Community Profiles Rare Community Profiles is a new Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their…
CureDuchenne, the nation’s leading nonprofit dedicated to funding a cure for Duchenne muscular dystrophy (DMD) and a Patient Worthy partner, held its first “Napa in Newport” event in 2015;…
Jamas and Margot LaFreniere started the Sophie's Hope Foundation in 2020 shortly after Sophie, their daughter, was diagnosed with a rare disease: glycogen storage disease type 1B (GSD1B). The mission…
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