cure drpla

CureDRPLA Global Patient Registry is available!

Click here for global patient registry

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 Registry

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.

Patient & Caregiver

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

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.

Research & Industry

Latest

Join us at ICAR – November 12-15

ICAR, largest gathering of ataxia scientists and medical professionals, will take place in London, November 12-15. CureDRPLA team members will be there, along with scientists working on DRPLA who will present their latest research.

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!

News

Attended Rare Disease Symposium

Attended Rare Disease Symposium

Oct 2, 2024

Last week, Dr Silvia Prades attended a conference to find out more about the latest work on rare diseases and how the medicines regulatory framework is expected to change in the coming years to facilitate research and approval of treatments for rare conditions like...

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Social

Cure DRPLA

2 weeks ago

Cure DRPLA
SAVE THE DATE DECEMBER 4 – DRPLA research update FOR NON-SCIENTISTS and Q&A session with neurologists In this session, Dr Silvia Prades will give an update on the projects funded by CureDRPLA. Followed by a Q&A session with Dr Yael Shiloh-Malawsky from the University of North Carolina and Dr Hector Garcia-Moreno from University College London, two neurologists with expertise in DRPLA.This event is tailor-made for individuals with DRPLA, their families and caregivers. Don’t miss this opportunity to gain insights, ask questions, and connect with fellow individuals who share similar experiences. Free registration is required to receive the meeting link.Date: Wednesday, December 4Time: 9-10am PST / 12-1pm EST / 5-6pm GMTLocation: Online via Zoomus06web.zoom.us/meeting/register/tZAqduitqDgsHtN5FFSx3XL5gqqPItJsPrqc ... See MoreSee Less
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Cure DRPLA

3 weeks ago

Cure DRPLA
Have you subscribed to the CureDRPLA newsletter?📨 The next issue will be out in a few days with lots of content for you - including a sneak peek into our 5-year impact report📣 Sign up now to stay up-to-date with news important to the DRPLA community, and 🔬 Find out more about the research projects we are funding Sign up now curedrpla.org/en/newsletter-archive/ #curedrpla #drpla #drplaresearch ... See MoreSee Less
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Cure DRPLA

4 weeks ago

Cure DRPLA
Last week, Dr Silvia Prades attended a conference to find out more about the latest work on rare diseases and how the medicines regulatory framework is expected to change in the coming years to facilitate research and approval of treatments for rare conditions like DRPLA. At the Oxford-Harrington Rare Disease Centre Symposium, Silvia listened to presentations from scientists and health professionals around the world and connected with a few of them to explore which collaborations are worth pursuing to improve outcomes for the DRPLA community. Panel members from left to right: Dr Richard Scott (Genomics England), Dame June Raine DBE (Medicines and Healthcare products Regulatory Agency), Prof Timothy Yu (Harvard Medical School), Melanie Dixon (CureDHDDS), Dr Kath Bainbridge (Department of Health and Social Care), and Dr Dan O’Connor (Association of the British Pharmaceutical Industry). ... See MoreSee Less

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Cure DRPLA

2 months ago

Cure DRPLA
Have you read the two articles we published this year? One article highlights the strides we and our scientific community have made in understanding DRPLA and our dedication to fostering a strong, united community of medical professionals, researchers and families. The other one dives deep into understanding DRPLA symptoms and their impact on daily life through interviews with people with DRPLA and caregivers. You can find them on our website with links to the full scientific articles: bit.ly/tard-article bit.ly/qualitative-interviews ... See MoreSee Less
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join drpla

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.