The A Million Dreams Gala A Virtual Event This virtual gala is a valuable fundraiser event for KrabbeConnect, a nonprofit organization dedicated to supporting the Krabbe disease patient community and finding a…
The MS MindShift initiative offers free educational online events that focus on helping people who live with multiple sclerosis (MS) better understand the critical role that healthy choices can have…
CureDuchenne's Cares Sessions: Helping Connect and Inform Patient Families October 3rd, 2020, 6:30 pm The Sessions program from CureDuchenne is geared specifically towards patients and their families as well as…
Glut1 Virtual Community Gatherings: Australia & New Zealand September 27th, 2020 Patient Voice in Research - input discussions for survey development The Glut1 Deficiency Foundation is not letting the coronavirus/COVID-19 pandemic…
Glut1 Virtual Community Gatherings: Children with Glut1 Deficiency Glut1 Pals September 26th, 2020 The Glut1 Deficiency Foundation is not letting the coronavirus/COVID-19 pandemic stop them from continuing in their mission…
Glut1 Virtual Community Gatherings: Glut1 Deficiency Parents Patient Voice in Research - input for survey development to capture patient and family experiences and identify needs September 26th, 2020 The Glut1…
CureDuchenne Cares Workshops: Hear The Latest From Experts September 26th, 2020, 8:00 am The Workshops program from CureDuchenne are day-long educational events that are oriented towards caregivers and Duchenne muscular…
The MS MindShift initiative offers free educational online events that focus on helping people who live with multiple sclerosis (MS) better understand the critical role that healthy choices can have…
CureDuchenne Webinar: Update on the Italfarmaco Givinostat Program September 24, 2020 Hear from Dr. Paolo Bettica about the latest news related to Italfarmaco's investigational therapy givinostat, which is being tested…
More Than Scleroderma: A Live Educational Event September 23, 2020 at 3:00 PM ET Join us for a webinar about scleroderma Because scleroderma is so rare, it can be hard…
The Global Genes RARE Patient Advocacy Summit September 21-23, 2020 This conference will be a convergence of a variety of rare disease stakeholders, such as rare disease patients, world renowned…
CureDuchenne's Cares Sessions: Helping Connect and Inform Patient Families September 19th, 2020, 6:30 pm The Sessions program from CureDuchenne is geared specifically towards patients and their families as well as…
Glut1 Virtual Community Gatherings: Spanish Language Group Q&A with Adult Patients & Families September 19th, 2020 The Glut1 Deficiency Foundation is not letting the coronavirus/COVID-19 pandemic stop them from continuing…
Tyrosinemia is a metabolic disorder which prevents the body from processing the amino acid tyrosine. Without treatment, the disorder can be lethal. There are three different types of tyrosinemia with…
More Than Scleroderma: A Live Educational Event September 16, 2020 at 7:00 PM ET Join us for a webinar about scleroderma Because scleroderma is so rare, it can be hard…
Living With PBC: Learning Together Join us for an ONLINE primary biliary cholangitis (PBC) event at 7:00 PM ET on Tuesday, September 15th, 2020. You’ll hear Patient Ambassador* Laurie G.…
More Than Scleroderma: A Live Educational Event September 14, 2020 at 6:00 PM ET Join us for a webinar about scleroderma Because scleroderma is so rare, it can be hard…
The Virtual Vestibular Conference September 14-18, 2020 In conjunction with Balance Awareness Week, the Vestibular Disorders Association will be hosting its first annual Virtual Vestibular Conference. Vestibular disorders cause a…
Glut1 Virtual Community Gatherings: Teen and Adults with Glut1 Deficiency The Overcomers September 13th, 2020 The Glut1 Deficiency Foundation is not letting the coronavirus/COVID-19 pandemic stop them from continuing in…
The GRIN Virtual Conference September 12, 2020 Don't miss the CureGRIN Foundation's GRIN Virtual Conference. The event will be packed with valuable information for the GRIN disorder patient community. Participants…
CureDuchenne Cares Workshops: Hear The Latest From Experts September 12th, 2020, 8:00 am The Workshops program from CureDuchenne are day-long educational events that are oriented towards caregivers and Duchenne muscular…
The International Conference on Dupuytren Disease and Related Diseases September 3rd-4th, 2020 Oxford, UK This conference will be hosted by the University of Oxford and will feature a variety of…
CureDuchenne Cares Workshops: Hear The Latest From Experts August 29th, 2020, 8:00 am The Workshops program from CureDuchenne are day-long educational events that are oriented towards caregivers and Duchenne muscular…
More Than Scleroderma: A Live Educational Event August 27, 2020 at 4:00 PM ET Join us for a webinar about scleroderma Because scleroderma is so rare, it can be hard…
The World Orphan Drug Conference USA 2020 The Global Orphan Drug Conference and Expo August 24th - August 26th, 2o20 in National Harbor, MD The conference is an event that…
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.
