RAREsummit19 is a 1 day summit focusing on patient-centricity in rare disease progress. What if we were able to share information with the power to revolutionise the current rare…
I had the pleasure of attending the Glut1 Deficiency Foundation’s 2019 Conference. While this article can't possibly do the event justice and encompass all it had to offer, we will…
The Denver Patient Education Conference 2019 Are you a sarcoidosis patient? Well don’t miss this important patient event. At this conference, sarcoidosis patients and their families will have the opportunity…
The 6th International Conference of Glycoproteinoses "Translating Scientific Discovery Into Therapies" This international event will include researchers, patients, and caregivers that are involved in the international glycoprotein disease communities. This…
The 30th Annual PMD Family Support Conference 2019 Indianapolis, Indiana This event is a valuable opportunity for Pelizaeus-Merzbacher disease patients and their families to come together for a valuable time…
The 2019 NORD Living Stronger Forum was held in Houston, TX, at the end of June. The event brought families and physicians from all over for educational presentations, community, and…
The MAGIC Foundation's 25th Annual Convention 2019 This comprehensive educational program will be an opportunity for patients, their families, and caregivers to learn the latest information about a variety of…
Speakers: Carla Duff, ANP Dani Ball To register for this live event, click here. For information on CIDP Webinar Wednesdays with this PW collaborator, click here. And to register, click here. Acknowledgment: This event…
2019 Soft Bones Patient Meeting La Jolla, California Are you a hypophosphatasia patient? Well don’t miss this important patient event. At this conference, hypophosphatasia patients and their families will have…
Speakers: William Blouin, ARNP Robert Romine To register for this live event, click here. For information on CIDP Webinar Wednesdays with this PW collaborator, click here. And to register, click here. Acknowledgment: This event…
The 2019 Biennial Conference The Glut1 Deficiency Foundation's biennial conference is an event that you won't want to miss. The conference will feature a variety of sessions related to various…
Our partner, The MDS Foundation is sponsoring another free MDS Patient & Family/Caregiver Forum. The event will take place in Iowa City, Iowa on Saturday July 20th, 2019. Event Summary:…
The HF Educational Meeting Seattle, Oregon The conference will be an opportunity for patient families and medical experts to meet and learn about the latest in idiopathic research. Additionally, families…
The 2019 AXYS Family Conference Atlanta, Georgia Are you or one of your family members affected by Trisomy X or other X and Y chromosome variations? Then this conference is…
The 2019 Annual SMA Conference Anaheim, California Cure SMA's annual conference is the largest conference in world focused on spinal muscular atrophy. The event includes and event for both patient…
The 2019 LPA 62nd Annual National Conference San Francisco, California The Little People of America's annual conference is the ultimate experience for people affected by dwarfism and diastrophic dysplasia. This…
HDSA 34 Boston: The 34th Annual HDSA Convention The 34th annual convention is tailored for Huntington's disease patients and their families. Join the HDSA for three days of educational sessions,…
Mitochondrial Medicine 2019 Mitochondrial Medicine 2019 is the annual symposium hosted by the United Mitochondrial Disease Foundation, an event that has been widely regarded by patient families, researchers, and physicians…
The 2019 Annual Conference This will be the 25th year of PPMD's annual conference, which is geared towards Duchenne muscular dystrophy patients, their families, researchers, caregivers, and physicians. Don't miss…
The Oklahoma City Patient Education Conference 2019 Are you a sarcoidosis patient? Well don't miss this important patient event. At this conference, sarcoidosis patients and their families will have the…
The 2019 Living Rare, Living Stronger NORD Patient & Family Forum Featuring The 2019 Rare Impact Awards As published on NORD's website, the 2019 Living Rare, Living Stronger NORD Patient…
The 2019 2-Day Patient Conference Manhattan Beach, California Are you a cutaneous T-cell lymphoma patient? Well don’t miss this important patient event. At this conference, cutaneous T-cell lymphoma patients and…
4th Annual PURA Syndrome Conference The conference will be an opportunity for patient families and medical experts to meet and learn about the latest in PURA syndrome research. Additionally, families…
The 2019 Spastic Paraplegia Annual Conference Patients, their families, medical professionals, and caregivers are invited to attend this conference. Participants will have the opportunity to network with one another, build…
The 2019 Living Rare, Living Stronger NORD Patient & Family Forum featuring the Rare Impact Awards 2019 This rare disease patient forum brings together health professionals, physicians, patients, and medical…
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.
