Rare Disease Week 2024: Policy, Community, Advocacy
, organized by the EveryLife Foundation for Rare Diseases, is one of the most important annual advocacy events for the rare disease patient community. The event is held the last…
, organized by the EveryLife Foundation for Rare Diseases, is one of the most important annual advocacy events for the rare disease patient community. The event is held the last…
In the rare disease community, fundraising plays a pivotal role in driving forward research and treatment initiatives, offering vital support to affected families, and guaranteeing access to necessary resources and…
Editor's Note: Chronic conditions and rare diseases don't discriminate, Patient Worthy and its partners are interested in amplifying the voices of those from all identities and backgrounds. If you have…
Editor's Note: Chronic conditions and rare diseases don't discriminate, Patient Worthy and its partners are interested in amplifying the voices of those from all identities and backgrounds. If you have…
Written by Maria Picone, TREND Community Ten years ago, my daughter was born with a rare, complex disease known as Prader-Willi syndrome (PWS). PWS is best known for causing insatiable…
The month of February is recognized as Turner Syndrome Awareness Month, a time to spread awareness about this rare disease among the medical field and the general public. The Turner…
Editor's Note: Chronic conditions and rare diseases don't discriminate, Patient Worthy and its partners are interested in amplifying the voices of those from all identities and backgrounds. If you have…
Editor's Note: Chronic conditions and rare diseases don't discriminate, Patient Worthy and its partners are interested in amplifying the voices of those from all identities and backgrounds. If you have…
Eliza is now 13 years old and was diagnosed at the age of three with a neurodegenerative disorder known as Sanfilippo syndrome. Eliza’s mother, Dr. Cara O’Neill, a pediatrician and…
Every year since 1954, the final Sunday in January has been recognized as World Leprosy Day. First established by Raoul Follereau, a French writer and philanthropist, the event is held…
On January 18, 2024, the Rare Disease Legislative Advocates (RDLA) hosted its monthly webinar. These webinars help provide updates to the rare disease community on legislation and other policy initiatives…
January 24, 2024 is recognized as Moebius Syndrome Awareness Day, a day to spread awareness about the rare disease Moebius syndrome among the medical field and the general public. The…
On December 5, 2023, the Rare Disease Legislative Advocates (RDLA) held an RDLA Caucus briefing. This briefing, held in collaboration with the Rare Disease Congressional Caucus, provided an update on…
Written by Melany Sanchez Hello, my name is Mélany, I am 18 years old and I am from Cuba, a very poor island in the Caribbean. I was born with…
Nathan Ehrlich, age 40, has had more health troubles than the average person, to say the least. As a teenager, he was diagnosed with leukemia. Thanks to the support of…
We can all say that our mothers gave us the gift of life. But how many can say that they gave the gift of life in return? One teenager in…
According to a story from Grimsby Live, the family of six year old Melissa Stark, who has Williams syndrome, has transformed their house into a Santa Claus themed wonderland of…
The holidays are a time of fun, family, and for many of us, a time when our chronic health conditions tend to flare up. We don’t mean for that to…
When she was born, Amy Parr was completely paralyzed from the neck down. Doctors were not optimistic about her future. Some said that she would not make it beyond her…
Thinking about the year-end holidays brings up a kaleidoscope of images, and an array of emotions for me. And everyone else too, I imagine. There are the vivid memories of…
Six years ago, Jonathan Kowalske's son Mac entered the world - and the family suddenly found themselves thrust into the rare disease community. Soon after birth, Kowalske and his…
Most people view Christmas as a time for celebrating. Spending time with family and getting out to festive events and parties can be cornerstones of the holiday. For children like…
Written by Maria Palombini Answer: at the time of diagnosis, it should be one of the first actions you, the patient and/or caregiver, should take. Why? Receiving a diagnosis with…
The need for increased awareness about Alzheimer’s disease is growing. The number of Alzheimer’s patients has increased since 1983, the year President Reagan designated November as Alzheimer’s Disease Awareness…
Every three to four minutes, someone in the U.S. is diagnosed with a blood disease such as lymphoma, leukemia, or sickle cell anemia. As reported in the Pittsburgh Post-Gazette,…