Welcome to Coleson's blog. We've created it to keep friends and family updated on the journey we are about to embark on.. We appreciate your support and words of hope and encouragement during this time when it matters most.

Saturday, June 1, 2013

Send a letter to your Congress to join the Rare Disease Congressional Caucus

Dear Friends

Please help fight for my son's life.  Rare Diseases do not get the attention or funding that other more common diseases get, therefore the burden is put on parents, friends and families to try to fundraise (Like parents don't have enough on their plates besides putting on fundraising events).

We have a great opportunity to strengthen advocacy for rare diseases on Capitol Hill.  Please take 3 minutes to ask your Members of Congress to join the Rare Disease Caucus.  The Caucus will help bring public and Congressional awareness to the unique needs of the rare disease community – patients, physicians, scientists, and industry, and will create opportunities to address roadblocks in access to and development of crucial treatments.  The Caucus will give a permanent voice to the rare disease community on Capitol Hill.  Working together, we can find solutions that turn hope into treatments.

Click here to send a letter to your Members of Congress!