Behçet’s UK

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Without the help of Beacon I could not have achieved what I have as chair of Behçet’s UK this past 4-years. The challenge for the rare disease community is immense and can be very lonely for individuals. I’ve lost track of the number of brilliant workshops, webinar, mentoring and e-learning opportunities that I have participated in to build up the necessary knowledge and skills to do my job competently; all working towards uniting communities affected by rare diseases.

Moreover, the research front is a highly complex, diverse, process-driven, expensive and often siloed environment. Beacon’s approach to get research-ready to build a supportive, strong and collaborative approach is of considerable importance.  Indeed, a collegiate and well-informed team effort is fundamental if equity in treatment and care is to be achieved for all those with rare diseases and their families, and ensure that the journey is not faced alone.

Tony Thornburn

 Chair, Behçet’s UK