Hayley Hubberstey is the HCD lead for real world evidence (RWE) research programmes in Huntington’s Disease. Voluntary engagement with the communities we seek to partner with is one way in which HCD can support our commitment to patient advocacy. Advocacy in this context involves designing and undertaking RWE research and, crucially, partnering in communicating the findings from real-world evidence research founded on the principles embodied by patient and public involvement and engagement (PPIE).
HDYO is a non-profit set up to provide support and education to young people (aged up to 35) impacted by Huntington’s Disease (HD) around the world.
Matt Ellison, HDYO Project Coordinator, was a young person from an HD family who wanted to use his own experience growing up with a parent with HD to change the landscape for other children and young people. At the HD World Congress in 2009, Matt met BJ Viau. The meeting led to the formation of HDYO, an organization dedicated to filling the gap in support and education for young people impacted by HD around the world.
After two years of fundraising, writing and researching, lobbying for partnership and engaging decision makers, HDYO was officially launched in February 2012 as a non-profit, with the web platform hdyo.org going live.
Hayley describes her introduction and relationship with the HD community:
‘I have been involved with the HD community for about a year, and it’s been such a special experience. I felt instantly welcomed and at home as a professional new to the community. I have made new friendships and have met many inspiring and dedicated people. I was lucky enough to meet Matt and I was really engaged with the work HDYO were doing. I was looking to volunteer and to support the HD community utilising my business experience, scientific knowledge and passion for the HD community – HDYO was the perfect fit.’
HDYO is supported by a working but voluntary board of directors and a dedicated global team of volunteers who help with translation, feedback and fundraising, representing HDYO at events, and being camp volunteers. Since 2017, expansion of the Board has continued embracing those with commitment and skills that reflect the aims and objectives of HDYO.
HDYO are currently seeking board members for two of the five strategic committees: Front line Services & Volunteer Management and Finance & Fundraising Committee. If you would like to get involved please contact email@example.com.
For more information the work of HDYO and to learn about its first international young adult congress to be held 12-14th March 2021, visit the HDYO website: https://en.hdyo.org/.
For more information on the RWE research programme at HCD, contact firstname.lastname@example.org.