The MDF went to Washington, DC, last week to represent the DM community and participate in the Rare Disease Legislative Advocates Conference and Lobby Day.
New DM Registry Launching on Rare Disease Day!
On Rare Disease Day 2013 -- February 28th -- you'll be able to take a more active role in the fight against myotonic dystrophy (DM) by joining the new Myotonic Dystrophy Family Registry (MDFR).
The MDFR will be unique in that it will not only help researchers find new, effective treatments and identify possible participants for upcoming clinical trials and research studies, but will also allow anyone who is registered to have access to the collected data, from academic and pharmaceutical researchers to individuals or families living with DM. The goal is to give all DM stakeholders, including family members, a better understanding of the disease, the DM community, and current research and advocacy efforts.
The Registry -- which will be completely anonymous -- is different from The National DM and FSHD Registry at the University of Rochester because it will include significantly more participants and will focus on statistically relevant demographic information, quality of life and other patient-reported information to support the development of clinical trials and research studies. Both registries are vital to the search for treatments and a cure, and we encourage you to participate in both.
If you have signed up for our e-newsletters, you'll receive an email from us on February 28th inviting you to participate and join the Registry (click here to sign up if you haven't already done so). In the meantime, for more information on how the MDFR will work, click here.