I had never heard of Rare Disease Day until a couple of weeks ago. The goal of RDD is to draw attention to rare diseases as an important public health issue that cannot be ignored. FTD is on the list of rare diseases but shown as Pick’s disease.
If you are interested in supporting RDD 2014, their web site has a list of activities that individuals and organizations can do and participate in. Go to rarediseaseday.us/take-action-now/
In Connecticut, there is an event at the Legislative Office Building, here is the info I got from the organizers:
“From 11am-1pm organizations are invited to set-up their materials and share information about the rare diseases they represent. At 1pm there will be a short program featuring a NORD speaker, a patient representative, a patient organization representative, a researcher and two members of the CT general assembly, Representative Johnson and Senator Gerratana.” www.rarediseaseday.org/event/united-states/229
The AFTD will participate in an event in Boston, 2/28, 11 a.m. at the State House, Nurses Hall. Katie Brandt, Caregiver & Volunteer Coordinator, Association for Frontotemporal Degeneration will be speaking. More info at rarediseaseday.us/events/events/#Massachusetts
Sponsors: NORD is a partner with EURORDIS in sponsoring Rare Disease Day and other initiatives to improve the lives of all people affected by rare diseases. NORD is the National Organization for Rare Disorders, providing advocacy, education and other services to improve the lives of all people affected by rare diseases. EURORDIS is a non-governmental patient-driven alliance of patient organisations representing 614 rare disease patient organisations in 58 countries covering over 4000 diseases.