As the Director of Support my role is to develop, implement and manage projects that work directly with patients and families affected by genetic, rare and undiagnosed conditions. I started working at Genetic Alliance UK in 2011 to establish SWAN UK (syndromes without a name), our support network for families of children and young adults affected by undiagnosed genetic conditions. As an ambassador for SWAN UK, I still coordinate the network’s activities at a national level and with Nick Meade, our Director of Policy, have initiated the SWAN Europe alliance to promote the issues affecting undiagnosed families at a European level. More recently I have been managing our Building Rare Communities project to support the creation of new support groups and develop and strengthen existing small groups, as well as overseeing the pilot of our new Rare Resources.
I have a Masters in Anthropology and Development Studies and have previously worked for other disability charities such as Kids and Centre 404. I have a particular interest in developing and providing opportunities for patients, families and parent carers to have an active and informed voice in decisions and processes that affect them.