CISCRP, The Center For Information & Study On Clinical Research Participation, is a unique and one-of-a-kind non-profit focused on clinical trial education. CISCRP is wants to bring the need for…
The Mastocytosis Society is an amazing organization that brings focus to patients with mastocytosis and mast cell activation diseases. They hope to bring awareness, as well as education to patients,…
Whether you’re dealing with chronic myelogenous leukemia (CML), chondrosarcoma, neuroblastoma, or the host of other pediatric cancer diagnoses, it’s the actual diagnosis that can take your breath away. You can…
You can give without loving, but you cannot love without giving. -Amy Carmichael Don't Forget-- It's also National Donor Day. Give one of the ultimate gifts of love this Valentine's…
The MDS Foundation is hosting a free luncheon this November! It will be held at the Craftbar Restaurant at 900 Broadway (between 19th & 20th streets) in New York, NY.…
Happy August Patient Worthians! We hope you're able to keep cool in this current heat wave. This month is Autoinflammatory Disease Awareness Month and we want YOU to know how to get involved.…
Whether you’ve just been diagnosed with IPF, or you’ve been living with the diagnosis for a while now, there’s one website location that you should get to know: The Pulmonary…
Channel your inner Mickey and put those big ears to the ground! What’s that you hear? Why, it’s the sound of a whole lotta cutting-edge, exciting resources from the hemophilia community heading to…
Have a rare disease? Have you ever been to a national patient conference? These are invaluable opportunities to connect with others who share your challenges and concerns! Imagine being in…
We all know the saying: April showers bring May flowers. But did you know that April sharing brings May caring? May is Vasculitis Awareness Month, and the Vasculitis Foundation has…
As my colleague James Earnest Cassady covered earlier this week, Wake Up Narcolepsy, or WUN, has been raising funds for narcolepsy research in a pretty spectacular way: They have a team…
Wake up, Narcolepsy! When runners leave the starting line in Hopkinton, MA, for this year's Boston Marathon, the pack will contain some extra motivated individuals. TeamWUN will once again sponsor "wunners"…
Come one, come all! Well, mainly those who you live with narcolepsy... The annual Narcolepsy Network (NN) Conference is in the works, and this year, Judith Owens, MD, MPH, Associate in Neurology (and…
What's the best way to raise money and awareness when you have a rare disease? Organize or participate in an event, duh. That's exactly what Dwayne Backer has been doing…
What does roasted corn have to do with cystinosis? If you're scratching your head, don't worry: At first, we were too. But in Buffalo Grove, IL, an annual Corn Roast sponsored by…
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