Thank you to all those who have submitted stories of hope and inspiration! We’ve received many heartfelt stories from parents and patients of those affected with Moebius Syndrome, CPS (Carbamoyl Phosphate Synthetase), Dystonia, undiagnosed, Glut1 DS, Krabbe’s Disease, Charcot Marie Tooth Disorder and many more. We want to hear your story too!
Nothing can portray the fight, the struggles, the daily challenges, the joy, the inspiration, the hope, as a story can. As we approach the month of February, and the celebration/recognition of World Rare Disease Day 2012, we would like to take this as an opportunity to share our communities stories with the world!
RAREProject/Global Genes Project will be co-promoting a ‘patient story of inspiration and hope’ every day in the month of February 2012, in support of World Rare Disease Day. Submissions are being accepted December 1, 2011 – January 15, 2012. w
Stories should be limited to 3 paragraphs and please provide a photograph for us to include. As a thank you for your participation, we will send you our new CARE ABOUT RARE Jeans ribbon car sticker! It is an exciting time and an important time for us to come together as a community!
Forward to a friend and help spread the word!