The Tampa Pig Jig is an annual fundraiser fair held to support NephCure Kidney International, which is a nonprofit that focuses on funding research for Focal Segmental Glomerulosclerosis (FSGS). FSGS…
Living with PBC: Learning Together For patients, family, healthcare professionals, and so many more! FEATURING: Certified PBC Nurse Educator, Jennifer Blood, and a Patient Ambassador, Deb Call 1-844-514-6294 to register and…
Our wonderful partners at the Cystinosis Research Network (CRN) are providing the first series of live broadcasts from a Cystinosis conference! Simply make sure you're connected to the internet and…
Register for the event here.
Register Here
$200 for members $230 for non-members There will be thought-leaders speaking, general and breakout sessions AND research updates!
On October 20th and 21st, the 2017 Rare Neuro-Immune Disorders Symposium (RNDS) will be held in Columbus, Ohio. The event is meant to bring together patients, families, researchers, and all…
Pre-registration deadline is Monday, May 1, 2017.
IGSD2017
The Susan Skinner Memorial Fund (SSMF) Scholarship was created to help foster the education of the newest generation of bleeding disorder advocates and researchers. Two scholarships are being offered this…
Hosted by NBS Connect and Southeast Regional Collaboration
Chances are if you have a primary immunodeficiency disorder, you don’t live near other teens with your same diagnosis. No one else gets what you’re going through. You may have…
The MDS Foundation is hosting another wonderful event! Where: Memorial Sloan-Kettering Cancer Center Concourse Conference Room 480 Red Hill Road Middletown, NJ 07748 Presenters: Virginia Klimek, MD Kelley Anderson, RN…
For more information, click here, call 215-573-6822, or e-mail Million Dollar Ride.
For more information, e-mail Toni or call +44 (0) 0345 389 9901 in the United Kingdom.
The Cystinosis Research Network (CRN) is a non-profit dedicated to supporting individuals and families affected by cystinosis. They are strong advocates for research who simultaneously focus on improving the lives…
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.
