I will be in Washington D.C. to attend the opening night of Rare Disease week on Monday, February 23rd at the RDLA events- Rare Diseases Legislative Advocates- before I head to New York City for the start of the Run. More details and announcements soon as this project moves forward. Looking forward to meeting with the leaders in the RARE community and learning more updates on current policy and legislation for RARE.

http://rareadvocates.org/rdw/