What is DRPLA?
Dentatorubral-pallidoluysian atrophy, commonly known as DRPLA, is a progressive brain disorder that causes involuntary movements, 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.
CureDRPLA
Global
Patient
Registry
The CureDRPLA Global Patient Registry is a worldwide registry of DRPLA patients.
This registry gathers the demographic and clinical information on DRPLA patients from across the globe. By collecting information on all DRPLA patients, the CureDRPLA Global Patient Registry will be a powerful resource for research and will enhance opportunities for treatment development.
Patient & Caregiver
Click below to find out what CureDRPLA has done and what we are currently doing to find to a treatment for DRPLA. You will also find online resources and support organizations for DRPLA as well as YouTube channels specifically focused on DRPLA.
Click below to find out what CureDRPLA has done and what we are currently doing to find a treatment for DRPLA. You will also find online resources and support organizations for DRPLA as well as YouTube channels specifically focused on DRPLA.
Patient &
Caregiver
Researcher
& Industry
CureDRPLA is investing in a number of projects in hopes of rapidly developing novel therapeutics for DRPLA. Information on funding opportunities, a list of our preclinical projects as well as other efforts can be found here.
Latest
News
Actions Needed to Improve Lives of People with Epilepsy
The World Health Organisation has published a technical brief about epilepsy with key information and recommendations for decision-makers to strengthen the services for people with epilepsy. They aim to raise the profile of epilepsy prevention, treatment and care....
Tracking upper limb function in DRPLA
To better understand upper limb function in a way that is meaningful to people with DRPLA, researchers included a novel approach to the DRPLA Natural History and Biomarkers Study. Dr Louise Corben from Murdoch Children’s Research Institute (Australia) and her team...
Poster session at ICAR
Poster sessions are a great way of showing a research project to a large number of scientists. Our Research Manager, presented a poster at the International Congress for Ataxia Research on November 1-4th, 2022. ICAR was the largest ever conference about ataxia with a...
Social
Successful meet up in Cardiff with DRPLA families - CureDRPLA
curedrpla.org
On February 22nd, I organised a meet up for families affected by DRPLA who are based in Wales. I travelled to Cardiff with Dr Hector Garcia-Moreno and Ola Volhin, who work at University College London...
Join Our DRPLA Community Today
At CureDRPLA, we connect patients, families, clinicians and researchers to further DRPLA research and work towards a treatment for DRPLA. You can join our community by going to Rare Connect. For more information about our community, get in touch with us.