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 |
Genetic Interest Group (GIG)  |
UK-based organisation that aims to increase the public/government profile of genetic conditions. | Fanconi Hope Charity is a member |
National Voices  |
Formed in 2008, National Voices is a coalition of more than 200 national health and social care organisations, coming together to ensure a stronger voice for all those who come into contact with the NHS and care services, and the voluntary organisations that help them. Our independence of Government, and our wide representation, rooted in service user experiences, gives us the authority we need to influence decision makers. | 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 |
DBA-UK |
The UK Diamond Blackfan Anaemia Support Group. | Close affiliation with our sister organisation |
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. Patient networking. 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 |
| Links to other FA Support Oragnisations worldwide are detailed here | ||
