DRPLAとは？
歯状核赤核淡蒼球ルイ体萎縮症は不随意運動、情緒障害、思考能力の低下を引き起こす進行性の脳疾患で、一般にDRPLAとして知られています。DRPLAの平均発症年齢は30歳ですが、この病気は乳児期から中年期まで、どの年齢でも発症する可能性があります。
cureDRPLAとは？
CureDRPLAは、ポール・コンプトンとアンドレア・コンプトンにより設立されたアメリカを拠点とする非営利団体です。ポールとアンドレアには2018年8月にDRPLAと診断された息子がいます。CureDRPLAの使命はDRPLA研究を前進させるために家族、医師、科学研究者たちを結び付け、DRPLAの治療に向けて取り組むことです。本ウェブページはこの病気に罹患し、その治療法を見つけ出すことに興味を持っている私たち以外の方々を探し出すために作成しました。
CureDRPLA
Global
Patient
Registry
CureDRPLAグローバル患者登録は世界的なDRPLA患者レジストリです。
本レジストリは世界中のDRPLA患者の人口統計学的情報および臨床情報を収集します。すべてのDRPLA患者の情報を収集することで、CureDRPLAグローバル患者レジストリは研究の強力なリソースとなり、治療法開発の機会を増やすことができます。
Patient & Caregiver
CureDRPLAがDRPLAの治療法を見つけ出すためにこれまでに行ったこと、そして現在行っていることを紹介しています。DRPLAだけに焦点を当てたYouTubeチャンネルだけでなく、DRPLAのオンラインリソースやサポート組織の情報もあります。
CureDRPLAがDRPLAの治療法を見つけ出すためにこれまでに行ったこと、そして現在行っていることを紹介しています。DRPLAだけに焦点を当てたYouTubeチャンネルだけでなく、DRPLAのオンラインリソースやサポート組織の情報もあります。
Patient &
Caregiver
Researcher
& Industry
CureDRPLAは、DRPLAの新規治療法が迅速に開発されることを願って、多くのプロジェクトに投資しています。資金提供情報、前臨床プロジェクトのリスト、その他の取り組みについては、こちらをご覧ください。
最新情報
Watch the recording of the 2024 DRPLA Research Update Talk![]()
Did you miss our meeting on December 4? Don’t worry—we have got you covered! Dr Silvia Prades recorded her presentation to allow more people to learn about our work and updates. This talk included updates on our organization, the DRPLA Natural History and Biomarkers Study, the Patient Registry and the highly anticipated updates on the N-of-1 clinical trials.![]()
We would like to extend our gratitude to everyone who joined the meeting—it was wonderful to connect with so many of you. We are also incredibly thankful to Dr Yael Shiloh-Malawsky and Dr Hector Garcia-Moreno for attending and taking the time to answer all your questions.![]()
youtu.be
Our mission is to connect families, physicians and scientific investigators to further DRPLA research and work towards a treatment. In this video we provide ...
The International Congress for Ataxia Research (ICAR) was held in London on November 12-15. This was the biggest gathering of people interested in ataxia, with 600 attendees in-person from 32 countries. ![]()
A true symbol of our global progress was the quantity and quality of DRPLA research presented at ICAR. There was one talk on DRPLA and seven posters. We also showcased our 5-Year Impact Report and other pamphlets at a booth to raise awareness about our work.![]()
Visit our website for the full list of DRPLA research presented at ICAR
Showcased DRPLA research to 600 people at ataxia conference - CureDRPLA
curedrpla.org
The International Congress for Ataxia Research (ICAR) was held in London on November 12-15. This was the biggest gathering of people interested in ataxia, with 600 attendees from 32 countries. The aud...
One DAY left for DRPLA research update for non-scientists and Q&A with neurologists - December 4![]()
If you want to learn more about our work and the research we’re funding, this session is for you. Our Research Manager, Dr Silvia Prades, will provide an update on our current progress and outline our objectives for the coming years. Including a recap of the research presented at the CureDRPLA Research Conference and ICAR. 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, experts 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, 4th December![]()
Time: 9-10am PST / 12-1pm EST / 5-6pm GMT![]()
Location: Online via Zoom.![]()
Registration is required to receive the meeting link us06web.zoom.us/meeting/register/tZAqduitqDgsHtN5FFSx3XL5gqqPItJsPrqc
One week left for DRPLA research update for non-scientists and Q&A with neurologists - December 4 ![]()
If you want to learn more about our work and the research we’re funding, this session is for you. Our Research Manager, Dr Silvia Prades, will provide an update on our current progress and outline our objectives for the coming years. Including a recap of the research presented at the CureDRPLA Research Conference and ICAR. 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, experts 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, 4th December ![]()
Time: 9-10am PST / 12-1pm EST / 5-6pm GMT ![]()
Location: Online via Zoom. ![]()
Registration is required to receive the meeting link us06web.zoom.us/meeting/register/tZAqduitqDgsHtN5FFSx3XL5gqqPItJsPrqc
Save the date – December 4, DRPLA research update for non-scientists and Q&A with neurologists![]()
If you want to learn more about our work and the research we’re funding, this session is for you. Our Research Manager, Dr Silvia Prades, will provide an update on our current progress and outline our objectives for the coming years. Including a recap of the research presented at the CureDRPLA Research Conference and ICAR.![]()
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, experts 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, 4th December![]()
Time: 9-10am PST / 12-1pm EST / 5-6pm GMT![]()
Location: Online via Zoom.![]()
Registration is required to receive the meeting link us06web.zoom.us/meeting/register/tZAqduitqDgsHtN5FFSx3XL5gqqPItJsPrqc#/registration
DRPLAコミュニティに参加する
CureDRPLAでは、患者、ファミリー、臨床医、研究者と、より進んだDRPLAの研究を結び付け、DRPLAの治療に向けた取り組みを行っています。Rare Connectのページへ進むと、コミュニティに参加することができます。 コミュニティの詳細情報にご興味のある方は是非我々へお問い合わせください。