How to keep up with RunningForRareDiseases.org in 2013

The 2013 Running for Rare Diseases marathon team will soon kick off its fundraising efforts and patient events leading up to the Boston Marathon on Monday April 15th. There are a number of ways you can stay connected to the team depending on how you like to get your news:

  • Subscribe by email to new blog posts here using the link on the right sidebar. This will notify you whenever new content appears on the site.
  • “Like” the team’s facebook page. We’ll post links there to new content on this site as well as photo galleries that will show up in your FaceBook news stream.
  • “Follow” the team’s http://twitter.com/run4raredisease”>twitter feed run4raredisease. You will get notified of new developments here as well as get race date and event update

Please help us get the word out by sharing/re-tweeting/forwarding information to you friends.

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One comment on “How to keep up with RunningForRareDiseases.org in 2013
  1. Jess says:

    I have several rare diseases, including gastroparesis, pathological, degenerative, severe myopia and Postural Orthostatic Tachycardia Syndrome, as well and predominately, a rare blood conditon where my body can’t maintain enough iron stores despite having infusions and transfusions. Many painful tests later and we still don’t know why. We are also starting to wonder if I have a mitochondrial disease as well. Just a few years ago I was running marathons and races of my own and I also directed two marathon races where we raised money for the Children’s Therapy School in my hometown. I want to get back to y strong self again, now I am confined mostly to a bed, couch, and wheelchair. I want to know how I can get a runner to run for rare blood disorders or functional bowel disorders that make it impossible for people to eat, so we have to rely on feeding tubes. I would be the biggest fan and cheerleader for “my” runner! Thank you for any consideration you can give to bringing these life altering diseases to light.

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Archive of posts from Marathon runners dedicated to making a positive impact on the lives of people with serious disease.