Former Jersey Boys star Jeff Leibow, organized his first Neurofibromatosis Hope benefit concert in Las Vegas in 2011. His hope was to make it an annual event that would go…
Nothing puts "fun" in a fundraiser than holding that event at Walt Disney World. For the past 25 years, Disney has hosted an annual marathon to help support hundreds of…
Indianapolis is known for its speedway, but this weekend, scientists, physicians and advocates for advancements in cystic fibrosis (CF) therapies are gathering there for the 31st Annual North American Cystic…
Painters, photographers, sculptors, and visual artists that defy categorization, take note! The EveryLife Foundation for Rare Diseases' Rare Artist Contest is back, for the ninth year in a row. The…
Come explore Colorado while attending the annual and internationally recognized forum for training and education for Huntington disease researchers!
It is Patient Worthy’s pleasure to report on the first International Acromegaly conference which brought together acromegaly support groups from East and West Canada,- The Vancouver and Atlantic Acromegaly support…
ROME! Come and experience beautiful Rome as well as stimulate the exchange of ideas, form new collaborations among investigators and clinicians with different expertise, spark interest in these complex diseases among postdoctoral research…
Another free event for MDS patients and caregivers is being held by the MDS Foundation! When: Saturday, November 18, 2017, 9:30 am-2:00 pm Presenters: Courtyard by Marriott San Antonio Medical Center…
Too much of a good thing can be dangerous. For people with acromegaly, a rare disease caused by too much growth hormone (GH), an excess of this otherwise helpful growth factor can…
We live in a world of over 7000 rare diseases, but perhaps one of the rarest with the most unusual of symptoms is Prader-Willi Syndrome. This genetic disorder affects one…
The Bank of America building in Dallas, Texas will light itself up in turquoise on Saturday October 28th to show support for Dysautonomia Awareness Month. Everything's bigger in Texas, including…
Another free event for MDS patients and caregivers is being held by the MDS Foundation! Where: Residence Inn New York the Bronx at Metro Center Atrium Rooms A&B (second floor)…
Primary biliary cholangitis (PBC) is a rare disease, but you don’t have to face it alone. Join us for an educational program and connect with others who understand what you’re…
The International Myotonic Dystrophy Consortium was held in San Francisco last month and while Patient Worthy was not there in person we were fortunate to have a family reporting from the…
Hosted in part by The Transverse Myelitis Association (TMA)
Last year in London, a flash mob took the streets and pounded out a choreographed routine to the song "I Am What I Am". They weren't just having a blast…
It's Guacher Disease Awareness Month! According to eurogaucher.org, International Gaucher Day was a success! This year it was observed on October 1st to bring awareness to Gaucher disease. The European Gaucher…
Take a Florida style getaway to Orlando to attend the largest human genetics meeting and exposition in the world. Learn and hear from and among 6,500 scientific attendees and over…
The first ever rare disease film festival took place the first week of October in Massachusetts! Founded by rare disease parents Bo Bigelow (USP7 mutation) and Daniel DeFabio (Menkes Disease),…
When we think of disabilities, a cane, walker or wheelchair may come to mind. Or perhaps you think of someone who is blind or deaf or has a learning disability.…
Have Neurogenic Orthostatic Hypotension or other MSA? Join the LIVE FEED and Watch the annual MSA Patient & Family Conference on Facebook On October 13-14, the Multiple System Atrophy (MSA)…
A recent announcement from the wonderful World Spina Bifida & Hydrocephalus Day website brought back some memories for me. Even before I became pregnant with my son, I heard about…
They look perfectly healthy. There's no outward sign of disease. But for millions of Americans, chronic and debilitating conditions such as idiopathic pulmonary fibrosis (IPF) could be lurking inside. October…
Don't forget to register for the upcoming MDS event in your area using the information above! A MDS Patient MDS Patient & Family /Caregiver Forum will be held in Stanford,…
It's that time of year again. Families across the country are making their annual pilgrimage out to the local pumpkin patch (or Kroger) to pick up fall's fruitiest porch decoration.…
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
