Duchenne muscular dystrophy (DMD) affects approximately 15,000 to 20,000 young boys in the US, but for the Richard and Jamie Romito family, those numbers mean nothing. All three of their sons…
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…
Do you have VASCULITIS? Associated with: Behcet’s Disease, Churg Strauss Syndrome, Cryoglobulinemia, Giant Cell Arteritis (Temporal Arteritis), Granulomatosis with Polyangiitis (formerly Wegener’s Granulomatosis), Hpersensitivity Vasculitis (Leukocytoclastic), IgA Vasculitis (Henoch-Schönlein Purpura), Kawasaki…
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,…
CFRI's third annual Embrace Retreat is happening May 5th - May 7th! The Embrace Retreat is specifically geared toward mothers of children and adults battling cystic fibrosis. Just in time…
Mark your calendars because World Parkinson's Day is here!! Winter is (mostly) over and spring is hot (emphasis on hot) on it's heels! And, of course, April showers means we're…
What is the perfect way to spend a Saturday? Well, if you are a fishing enthusiast and enjoy raising money for a cause I have the perfect event for you.…
Details are below, but for more information, click here.
The On Tap for TS event is Saturday April 1, 2017 from 4 - 8 pm to benefit tuberous sclerosis complex (TSC) and autism research. It will be at BadWolf…
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…
Advance Registration: February 28, 2017 Housing Request: March 7, 2017 Register here.
The Tuberous Sclerosis Alliance works to bring awareness to tuberous sclerosis complex (TSC). They also work to raise funds for TSC. Over the years, some of the greatest in the…
In addition to the event details below, visit The Coalition for Hemophilia B's Facebook page here.
The Cystinosis Research Foundation Day of Hope Family Conference registration closes on March 17th! So register now.
Have you ever felt woozy when you stood up? And maybe it was so bad you actually fainted. One possibility is you have a form of dysautonomia called postural orthostatic…
The Rare Impact Awards for 2017 will be held this year, on May 18th, at 6:30 pm in Washington, DC. The Rare Impact Awards is the National Organization for Rare Disorders (NORDS)…
April 17, 2017 is World Hemophilia Day. This is significant not only for people with hemophilia, but also for those with other bleeding disorders like von Willebrand disease (vWD). If…
As Erica Zahn wrote back in February, MGFA's National Conference in New Orleans, LA offers patients and families the chance to hear the latest news, research and treatments for myasthenia gravis.…
The Endocrine Society's Endo 2017 is the world's largest endocrine science presentation. Attendees will be able to network, learn about the newest product and technology updates, listen to thought-leaders, and…
The Muscular Dystrophy Association's Scientific Conference Registration closes February 28th! This event brings all the important players together in the Muscular Dystrophy world to promote research around management, treatment and…
The Estevan Kinette's Club requests the pleasure of your company at their inaugural Princess Ball at the Beefeater Plaza in Estevan on January 16th. Please come expecting to dance,…
Have you always wanted to share your story with Congress to ask for more help with your Rare Disease? The Every Life Foundation is making it easier with travel stipends…
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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.
