DRPLA란 무엇입니까?
일반적으로 DRPLA로 알려진 담창구 시상하부 위측증은 불수의적인 운동, 정신적 정서적 질환, 그리고 사고 능력의 저하를 야기하는 진행성 뇌질환입니다. DRPLA의 평균 발병 연령은 30세이지만, 이 질환은 유아기에서 중년기까지 언제든지 발생할 수 있습니다.
CureDRPLA란 무엇입니까?
CureDRPLA는 피울과 안드레아 콤프턴이 설립한 미국 기반의 비영리 단체입니다. 파울과 안드레아에게는 2018년 8월에 DRPLA 진단을 받은 아들이 있습니다. CureDRPLA는 가족, 의사 및 과학 연구자를 추가적인 DRPLA 연구와 DRPLA 치료를 위한 작업에 연결하는 것을 사명으로 합니다. 이 웹 페이지는 이러한 질환을 가지고 있으며 해당 치료법을 찾고자 하는 다른 환자를 찾기 위해 개발되었습니다.
CureDRPLA
글로벌
환자
등록부
CureDRPLA 글로벌 환자 등록부는 DRPLA 환자들에 대한 세계적 범위의 등록부입니다.
이 등록부에서는 전 세계 DRPLA 환자에 대한 인구학적 통계 및 임상 정보를 수집합니다. CureDRPLA 글로벌 환자 등록부는 모든 DRPLA 환자에 대한 정보를 수집함으로써 강력한 연구 자료가 될 것이며 치료법 개발 기회를 강화할 것입니다.
환자와 간병인
아래를 클릭하여 CureDRPLA가 어떤 일을 수행했으며 현재 DRPLA 치료를 위해 무엇을 하고 있는지 알아보십시오. 또한 DRPLA에 대한 온라인 리소스와 지원 조직 및 DRPLA를 특별히 다룬 유튜브 채널도 확인할 수 있습니다.
아래를 클릭하여 CureDRPLA가 어떤 일을 수행했으며 현재 DRPLA 치료를 위해 무엇을 하고 있는지 알아보십시오. 또한 DRPLA에 대한 온라인 리소스와 지원 조직 및 DRPLA를 특별히 다룬 유튜브 채널도 확인할 수 있습니다.
환자와 간병인
연구자와
산업
산업
CureDRPLA는 DRPLA에 대한 새로운 치료법을 신속하게 개발하기 위한 바램으로 여러 프로젝트에 투자하고 있습니다. 여기에서 자금 지원 기회에 대한 정보, 사전 임상 프로젝트 목록 및 기타 노력의 결과를 확인할 수 있습니다.
최신
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
오늘 당사의 DRPLA 커뮤니티에 가입하세요
CureDRPLA에서는 환자, 가족, 임상의 및 연구자를 DRPLA에 대한 추가 연구와 DRPLA 치료를 위한 작업에 연결합니다. 귀하는 Rare Connect를 방문하여 당사 커뮤니티에 가입하실 수 있습니다. 당사 커뮤니티에 대한 자세한 정보를 원하시면, 저희에게 연락해주십시오.