Lynch Syndrome International Conference and Family Reunion


Submitted by: Linda Bruzzone Lynch Syndrome International and Creighton University Health Services Education are pleased to invite you to attend the Lynch Syndrome International Conference and Family Reunion on June 21, 2014, in Buena Vista Palace, Orlando, Florida. Presenting a hands-on, one day educational event […]

A Year as Champions: Dylan and Jonah


We were so honored to have both boys at our 2013 Champions of Hope Tribute event for their fantastic contribution to rare disease education through their book “Chocolate Bar.” We asked their parents what a year as Champions of Hope meant to them and where they […]

Can You Tell Your Rare Disease Story in Six Words? Enter and Win.


“For sale: baby shoes, never worn.” It was a six word story that Ernest Hemingway wrote that changed the idea that a great story couldn’t be a brief one. We find that there are many great six word stories out there—and we want to hear […]

Connexion Healthcare Celebrates WRDD with Local Fundraiser, Wear That You Care

PicMonkey Collage

Rare Disease Day is an international event held on the last day of February each year. The goals are to raise awareness about rare diseases and improve access to treatments and medical representation for individuals with rare and genetic diseases. In the United States, more than […]

The Million Dollar Bike Ride for Rare Disease


The Center for Orphan Disease Research and Therapy at the University of Pennsylvania and Rare Disease Cycling are proud to announce The Million Dollar Bike Ride 2014– our first annual cycling event to raise funds for rare disease research. It will be on May 3, 2014 with its start time at […]

Children’s Neurobiological Solutions Foundation Launches Mapping Project!


Organization: CNS Foundation With the soft launch of the new CNS Foundation website officially over, CNS Foundation would like to announce the official launch of the CNS Foundation Mapping Project! The Mapping Project is a two-fold project; first, CNS Foundation seeks to identify and define […]

Final Days of CrowdRise Holiday Challenge to Cure JM– We Need You!


In their final days of the CrowdRise Holiday Challenge, Cure JM is so close to winning $100,000! Cure JM is still in first place but their margin is shrinking.  Not only do they want to finish first to win the extra $100,000, but they want […]