What is DRPLA?
Dentatorubral-pallidoluysian atrophy, commonly known as DRPLA, is a progressive brain disorder that affects coordination, balance, speech, and 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 adulthood. The symptoms and progression vary depending on the age of onset.
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
In which countries can we find people with DRPLA?
If you ever asked yourself this, the map we have created will come in handy. We coloured in orange those countries in which at least one person with DRPLA has been identified – 35 countries in total! We have gathered this information from scientific articles and...
Successful meet up in Cardiff with DRPLA families
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 on the DRPLA Natural History and Biomarkers Study. We met with...
Interview about the DRPLA Natural History and Biomarkers Study
We interviewed Dr Hector Garcia-Moreno and Ola Volhin about the DRPLA Natural History and Biomarkers Study, watch the full interview here. This is a global study with sites in London, New York and North Carolina, all of which are currently recruiting participants. The...
Social
Junko Shiozawa's journey: Raising awareness for CureDRPLA in Japan - CureDRPLA
curedrpla.org
Junko Shiozawa, our Advisory Board Member, has been on a remarkable journey of advocacy and awareness since her daughter was diagnosed with DRPLA 15 years ago. Her daughter currently faces significant...
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Welcome! You are invited to join a meeting: DRPLA Research Updates and Q&A. After registering, you will receive a confirmation email about joining the meeting.
Sharing the success of the 2023 CureDRPLA Research Conference, Oct 10-11 - CureDRPLA
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CureDRPLA hosted an in-person research conference in Boston on October 10-11, with 26 attendees. Including researchers from academic institutions in the US, UK, Italy and Japan attended the conference...
bit.ly
Welcome! You are invited to join a meeting: DRPLA Research Updates and Q&A. After registering, you will receive a confirmation email about joining the meeting.
bit.ly
Welcome! You are invited to join a meeting: DRPLA Research Updates and Q&A. After registering, you will receive a confirmation email about joining the meeting.
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.