Thank you for supporting our fundraising efforts for NORD! Brianna and I raised $6000 - 240% of our goal.
I ran the 2013 Boston Marathon on Monday April 15th with the Genzyme marathon to raise awareness of rare diseases -- particularly for my patient partner Brianna. You can read more about her and her disease here.
You can learn more about the team at http://runningforrarediseases.org.
Before undertaking this goal, I had never run more than 8 miles and had gotten, let's say, a bit out of shape. Brianna' courage and persistance has been an inspiration every day of the journey.
One thing that nearly all rare disease patients have in common, including Brianna, is a long period of undiganosis or misdiagnosis of their disease This year the team is raising money for a specific, soon to be announced, initiative by NORD to conduct a survey of rare disease patients, patient organizations and physicians,
• To collect data to gain insight on the frequency of misdiagnosis, and the time it takes to receive an accurate diagnosis of a rare disease.
• To help us gain the attention of the community at large and to make physicians aware that, for many people with rare diseases, getting an accurate diagnosis is still an elusive dream.
• To provide a platform for NORD to publicize the extent of the problem and to enlist physicians to help in addressing it
• To help gain the attention of legislators and corporations to help further drive investment into rare disease research
• To provide basis from which decisions can be derived on how the Initiative can be focused in 2014 and beyond
• To link the greater rare disease community, providing clear visibility to the 6,000 rare diseases affecting more than 60 million people globally, so that no one stands in isolation
Many thanks for your support -- and don't forget to forward this to anyone who you think might want to donate too!