CureDRPLA Global Patient Registry is available!

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

DRPLA n-of-1 clinical trial

Take a few minutes to read this announcement about an upcoming n-of-1 clinical trial for an individual with DRPLA based in the US.

Watch our 2023 DRPLA research update

Every year, we like to provide an update on our projects, offering you insight into what we are working on and what is on the horizon. Do not miss out! https://youtu.be/9R5UcB26_FU

Register for DRPLA Research Talk and Q&A, Nov 14

Event tailored for individuals with DRPLA, their families and anyone interested in DRPLA. Make sure to register in advance (it’s free!). Our Research Manager, Dr Silvia Prades, will be providing a comprehensive update on the projects funded by CureDRPLA. Followed by a...

The 2023 CureDRPLA Research Conference is taking place in Boston on October 10-11

We hosted the first-ever CureDRPLA Research Conference in May 2022, with participation from scientists, neurologists, and representatives from pharmaceutical and biotech companies. It was such a huge success that we decided to make it a yearly event and the time has...

Sign up for CureDRPLA newsletter

Be among the first to know and become part of our community. Sign up here.

Rareconnect closing down

Rareconnect will retire on 1st December 2023 and we won't be able to post on the DRPLA community anymore. You can continue getting updates on the following sites:DRPLA Facebook group - https://www.facebook.com/groups/144167217964CureDRPLA Facebook page...

New interview alert!

Junko Shiozawa, Advisory Board Member, visited Europe and met with Julie Greenfield, Head of Research at Ataxia UK, to talk about ataxia research and the latest news in DRPLA.

Are your healthcare professionals knowledgeable about DRPLA?

From your experiences when dealing with healthcare professionals: What information would be helpful to have out there?Are your healthcare providers familiar with CureDRPLA?Would it be helpful to have a flyer about DRPLA in lay language?What information would be...

Share our new CureDRPLA pamphlet to raise awareness of DRPLA

You can find it here. Send it to friends, family, caregivers and medical professionals!

We are presenting a poster at ICAR about the CureDRPLA Global Patient Registry

Silvia will present a poster with data collected from the 33 participants. It will address questions like ‘What is the average age of onset?’ ‘What are the most bothersome symptoms?’ ‘How many patients experience epilepsy?’ and many more.

News

What have we been up to in 2023?

What have we been up to in 2023?

Every year, we like to provide an update on our projects, offering you insights into what we are working on and what is on the horizon. On November 14th, we hosted an online event for individuals with DRPLA and their family members in which Dr. Silvia Prades gave an...

read more
New initiative: DRPLA Centers of Excellence

New initiative: DRPLA Centers of Excellence

DRPLA is a complex and heterogeneous condition that impacts many aspects of everyday life, thus individuals affected and their families require access to specialized care to better understand it and find the best way to manage it while a treatment becomes available....

read more

Social

4 hours ago

Cure DRPLA
Rare Disease Day serves as a powerful reminder of the extraordinary resilience and spirit of the 300 million people worldwide living with a rare disease, along with their families and caregivers. Share this post on your social media to raise awareness about rare diseases. ... See MoreSee Less
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1 month ago

Cure DRPLA
Did you miss our 2023 DRPLA Research Recap? ▶️ It's now available for viewing on YouTube! Each year, we provide updates on our projects, giving you insight into our current work and what's on the horizon 🚀 Although the video delves into research, we've explained it all in layman's terms, ensuring everyone can easily follow along. Watch our research update here youtu.be/9R5UcB26_FU?si=UGEo8-flVxaDHe73 #drplaresearch ... See MoreSee Less
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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.