What is HD-CAB?
The HD-Community Advisory Board (HD-CAB) is a partnership between the three biggest international HD advocacy organisations – European Huntington Association (EHA), the International Huntington Association (IHA) and the Huntington’s Disease Youth Organisation (HDYO).
Our mission is to represent the voice of the global HD community and provide HD community experience to researchers, drug developers, regulators and policy makers.
- We aim to ensure that critical factors aren’t overlooked in the design and implementation of clinical trials
- We advocate on behalf of the global HD community for regulatory processes and policies that facilitate and accelerate access to treatment.
How It Works
We arrange small group meetings – advisory boards – so that you can discuss topics and get feedback from those who know what it’s like to be a trial participant, potential participant, or companion. We will work with you to define advisory board objectives, agenda and timing as well as the participant profile and numbers. We take care of the logistics, co-facilitate the meeting and send you post-meeting notes and recommendations. It couldn’t be easier.
Apart from answering your specific questions, advisory boards are a great opportunity to connect with HD community leaders.
We Can Help
Advocates bring lived experience from different perspectives and can give input on:
Symptom priorities
Outcome measurements
Risk tolerance
Recruitment and retention
Challenges for trial participants and companions
Communicating with the HD community
Meet our Team!
HD-CAB is made up of more than 40 HD family members from 6 continents and 27 countries:
