In 2020, Chris and Susan Finazzo received news that would change the trajectory of their lives. They learned that their sons Chase (now 9) and Dylan (now 6) had a…
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…
When Tom and Tammy Parteleno first learned that their son Michael had Batten disease, it felt overwhelming. Scary, even. What would the future bring for their son? The Parteleno family…
For as long as he can remember, Eli McCausland has been fascinated by wrestling. His passion for the sport eventually culminated in his co-ownership of Midwest All-Star Wrestling, as well…
The Rogers, Minnesota hockey community is strong and unified; if something happens to someone in their ranks, they step up to assist. But nothing could have prepared them for the…
In June 2022, 16-year-old Patrick McLaughlin was officially diagnosed with aplastic anemia, a rare form of bone marrow failure. Inspired by Patrick's journey and his resilience throughout this process, the…
Ally and Jake Shaw always dreamed of having a big, happy family. The pair began their journey with their daughter Nala, now just under 3 years old, and later brought…
When Mercedes Young found out that she was pregnant with her son Milo, she knew that she would do everything possible to protect and support her son. Milo was born…
Shortly after he was born, Asa Burnside was diagnosed with Niemann-Pick disease type A, a rare genetic metabolic disorder. Since then, Asa has brought so much joy to his family’s…
Have you ever thought about walking to raise funds and awareness? Well, at the Twin Cities Team Hope Walk, you can do just that! According to Kare11, this event…
According to a recent article, the family of a young boy from Australia who is diagnosed with the rare genetic disease mucopolysacchariodosis type 1 (MPS 1) is sharing his story to…
Fundraising is extremely important when it comes to rare disease research, and recently a community came together to help a little boy living with Sanfilippo syndrome. Simon is 5 years…
When David and Melissa Wickham found out that they were expecting, the pair was thrilled. They had already been together for years – it took seven to conceive their daughter,…
Nancy Green and Judi Beckerleg first met nearly 22 years ago in 1999. After Judi moved to Arizona, she began working as an aide in Nancy's classroom, where Nancy taught…
In 2019, Nathan James Bryan was 31 years old. He enjoyed drinking beer with his friends, working out, and spending time with his family. In fact, he had been staying…
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…
Now that it's officially October, it's time to celebrate my personal favorite holiday - Halloween. That means haunted houses, scary movies, creative costumes, and spooky decorations. One Transcona family is…
At just 18 weeks old, Ivy Gaines, who was born prematurely, was diagnosed with spina bifida. His parents, Robert and Brittney, have worked tirelessly to ensure that Ivy is receiving…
"Rare" is a documentary that gives its viewers a glimpse into the world of rare diseases, something that many people know little about. Until now, the project has been funded…
It's a beautiful thing when a community pulls together to support one of its members. This is exactly what the Madeira community is doing for 16-year-old Diego Ramirez. He recently…
Lytle, Texas is a small town located outside of San Antonio. Recently, the entire community came together to support a young boy living with autosomal recessive polycystic kidney disease (ARPKD).…
When you think of effective fundraisers, do you think of pickleball? Well, a Kansas community did just that. According to a video and transcript on KMBC News 9, his community…
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…
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…
Do you love sports? How about fundraising for a good cause? Well, if you’re located in New Jersey, you may soon be able to take part in a fantastic fundraising…
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