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,…
If you missed the 2017 Global Genes Patient Summit's breakout session Strengthening your Care & Support Team, Home Team Advantage: How to Arrange for Palliative Care, we're here to fill…
It's National Immune thrombocytopenic purpura (ITP) Awareness Month! In honor of ITP awareness month, here are some ITP facts from the 2017 PDSA Conference in July: The conference kicked off…
Our partner, The MDS Foundation, is hosting another wonderful event for patients and caregivers. The event is completely free, just don't forget to register! When: Saturday, September 9th, 2017 Where:…
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…
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…
At the Myasthenia Gravis Foundation of America’s annual conference this year, Kathryn Rodriguez (pictured above with her husband Alexis) led some incredible breakout sessions for the caregivers/loved ones of those…
Friday was an incredibly important day. Yes, it was Cinco De Mayo, but it was also the first time the FDA has approved a treatment for ALS (Lou Gehrig’s Disease) in…
At the 2017 MGFA conference a panel consisting of Bruce Yelverton (Myasthenia gravis [MG] patient and retired paramedic and EMS director), Sally O'Meara (MG patient and registered nurse), and Shannon…
This article was originally written a year ago. We are republishing it today in Prince's memory. I’m sure you’ve seen countless tributes to Prince in honor of his legacy.…
At the 2017 MGFA conference a panel consisting of Denise Trombly, Kim Eldridge, Mike Ursic, and Nancy Law presented “Becoming a “Take Charge” Patient: A Proactive Approach to Managing Your…
When: May 20th Where: University of Chicago Medicine Center for Care & Discovery CCD Board Room 5700 S. Maryland Ave Chicago, IL 60637 Presenters: Olatoyosi Odenike, MD Andrew Artz, MD,…
Upcoming event made possible by the MDS Foundation! Whether you are a newly diagnosed patient, a long-term survivor, or a caregiver, this event will give you the opportunity to learn…
It's not selfish to take care of yourself. It's good for you and it's good for your loved ones. It's hard to be there for other people when you haven't…
No matter what happened in your past or what may happen in you're future, it's no match for you. You are tough enough to handle it. Your inner strength is…
A frequent problem with for rare disease patients worldwide is being correctly diagnosed. Prior to the diagnosis you won't know the proper treatments, you don't know why you're experiencing your…
What at first glance sounded like nothing but good news, the FDA's approval of an Duchenne Muscular Dystrophy drug, has complicated undertones. It was announced last week that Emflaza (deflazacort) was approved…
We want to celebrate our patient contributors and writers for their efforts in helping the rare community, bringing awareness, understanding and compassion to often neglected disease. The following article was originally…
We want to celebrate our patient contributors and writers for their efforts in helping the rare community by bringing awareness, understanding and compassion to often neglected disease. The following article…
Pharmaceutical companies Takeda and Ovid have agreed to work together to develop a new drug for rare pediatric epilepsies. The continued development of Takeda’s compound TAK-935 will be shared by…
We want to celebrate our patient contributors and writers for their efforts in helping the rare community by bringing awareness, understanding and compassion to often neglected disease. The following article…
The first MDS patient forum of 2017 is fast approaching! The forum is sponsored by the MDS Foundation is completely free for you! Just don't forget to register. The event…
The above photo is of Kristina by Sandro Georgi Photography. Check out Kristina's story of living with narcolepsy by clicking here. If you visit Patient Worthy or our Facebook page, then…
Whichever holiday you celebrate can be difficult when you're living with a chronic illness. We hope that you feel well enough to enjoy your favorite part of the season and…
At 2pm Eastern Time on Tuesday, December 20th there will be a Scleroderma support group hosted by The Scleroderma Foundation's Tri-State Chapter. Anyone suffering from Scleroderma or anyone who loves somebody…
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