Fanconi Hope Affiliations
Fanconi Hope is affiliated in various ways to a number of organisations:
|British Society for Gene Therapy (BSGT)||The aim of the British Society for Gene Therapy is to accelerate scientific progress and promote ethical and efficient transfer of gene- and cell-based technologies from the laboratory into the clinic. Gene and cell therapy is an area where co-operation between ALL the interested parties – general public, patients, scientists, government and the media – is vital for the optimal development of these technologies and treatments, and BSGT is working towards becoming this pro-active interface.||Trustee Membership|
|National Council for Voluntary Organisations (NCVO)||Giving voice and support to civil society. NCVO has many specialist teams who provide information, advice and support to others working in, or with, the voluntary sector. These teams produce publications, briefing papers and guidance notes; run training, conferences and seminars; and offer a range of networks and practitioner forums.||Fanconi Hope Charity is a member|
|UK-based organisation that aims to increase the public/government profile of genetic conditions.||Fanconi Hope Charity is a member|
|Small Charities Coalition||The Small Charities Coalition exists to help small charities access the skills, experience and resources they need to achieve their aims.||Fanconi Hope Charity is a ‘friend’ of the SCC|
|Contact a Family||The only UK-wide charity providing advice, information and support to the parents of all disabled children.||Strong support provided by CaF to Fanconi Hope and affected families|
|National Organization for Rare Diseases (NORD)||Information about rare disorders.
Referrals to support organizations.
Publications to enhance awareness among medical professionals.
Advocacy on issues of concern.
Research grants and fellowships.
Medication assistance programs to help patients obtain certain life-sustaining drugs they would not be able to afford.
|Fanconi Hope registered on NORD database|
|Genetic Disorders UK is a registered charity with a vision to improve the lives of individuals and families affected by genetic disorders. Our mission is to be the leading source of information and support for both those affected by a genetic disorder, and the charities and patient groups that support them, by bringing together everyone’s combined experience in a place it can be shared.||Fanconi Hope joined Mar 2015|