DENTATORUBRAL-PALLIDOLUYSIAN ATROPHY “DRPLA”
What is DRPLA? Dentatorubral-pallidoluysian atrophy, commonly known as DRPLA, is a progressive brain disorder that causes involuntary movements, mental and emotional problems, and a decline in thinking ability. The average age of onset of DRPLA is 30 years, but this condition can appear anytime from infancy to mid-adulthood.
What is CureDRPLA? CureDRPLA is a US based non-profit founded by Paul and Andrea Compton. Paul and Andrea have a son that was diagnosed with DRPLA in August 2018. The mission of CureDRPLA is to connect families, physicians and scientific investigators to further DRPLA research and work towards a treatment for DRPLA. This webpage was created to find others that have this condition and are interested in finding a cure.
Why build a DRPLA community? By growing our community, we will create awareness of the disease, attract world class researchers, share information on emerging drugs and help facilitate natural history studies, biomarker development and clinical trials.
In order to do this, we are utilizing a very helpful multilingual site called Rare Connect.
What can you do?
1) Register on the DRPLA subgroup at RareConnect.Org
2) Enroll in the international patient registry at the Coordination of Rare Diseases at Sanford (CoRDS) https://research.sanfordhealth.org/rare-disease-registry. The National Ataxia Foundation utilizes this registry to determine populations of various rare diseases. This is an initial step to having the NAF and others recognize the DRPLA population.
Please see Current Initiatives for what we have accomplished so far.