The Global Huntington’s Disease Community Advisory Board (HD-CAB)
The European Huntington Association (EHA), the International Huntington Association (IHA) and the Huntington’s Disease Youth Organisation (HDYO) are excited to officially announce their new project, called HD-CAB. As a coalition of partners, their main mission is to represent the voice of the global HD community and provide HD community experience to regulators, industry, researchers and governing bodies.
HD-CAB is an instrument to facilitate patient-oriented research and clinical trials as well as fair processes to make treatment accessible for all patients. HD-CAB has a global perspective with members from 6 out of the 7 continents and the main aims are 2:
- Coordinate with pharmaceutical companies and our global advisory team to ensure research progression is effective and meets the needs of the patients and families
- Advocate with governing bodies globally to make drugs accessible to the HD community
Astri Arnesen, the president of EHA said in the press release of July 12th “For us, it’s important to say that regardless of where HD affected individuals live on this globe, we are all Huntingtonians. We are one big family and we share the same problem. And for this reason the mission to advocate for access to all is important to HD-CAB.”
The chair of the HDYO board, Hayley Hubberstey, also added “We believe that Patient-oriented input is highly needed to meet the needs of the patient community, speed up recruitment and increase retention for all HD clinical trials. We hope that HD-CAB will be successful in incorporating the patient-voice in therapeutic development efforts in Huntington’s disease.“
For more information please reach out to Svein Olaf Olsen; svein@iha-huntington.org, Hayley Hubberstey; hayley@hdyo.org or Astri Arnesen; astri@eurohuntington.org