More about Fanconi Hope

Fanconi Hope is a registered national charitable trust set up by parents of Fanconi Anaemia (FA) affected children and clinicians with an interest in FA:

  • To support a UK Fanconi Anaemia National Registry so as to ensure Fanconi Anaemia affected children and their families are kept track of and provided with the best care.
  • To promote awareness and understanding of Fanconi Anaemia among affected families, the medical profession, and the general public.
  • To encourage translational research which may directly benefit Fanconi Anaemia affected children and their families.
  • To encourage research in the area of Fanconi Anaemia that may have benefit for the general public, e.g., in the treatment of cancers in general.

In 2008 three parents of affected children, Thomas Carroll, Richard Kawalek and Bob Dalgleish started the Fanconi Hope Charity to fund research into this disease, to help engender consistent best practice treatment across the UK by initiating and running an NHS FA Clinical Network and to provide much-needed support to affected families through the provision of information and improved family contact. The Charity is very fortunate to work under the patronage of The Duchess of Devonshire, who takes an active part in Annual Trustee meetings.

Due to the rarity of the disease Fanconi Hope has had to reach out internationally, with the US-based Fanconi Anaemia Research Fund (FARF) being our principal partner. FARF provides considerable support and guidance and we are able to use the services of their Scientific Advisory Board for Fanconi Hope-sponsored research projects in the UK.

Small Charity. Big Impact.

Although the charity is small and staffed by volunteers in their spare time, Fanconi Hope has been able to make significant progress in a number of areas:

Bringing Clinicians Together to Share Best Practice:

  • The Fanconi Anaemia Clinical Network has been established, within the context of our National Health Service and includes around 30 clinicians across the UK and Ireland.
  • A UK Standards of Care document has been published for the first time by the Clinical Network, and has now been widely circulated throughout the UK Clinician community.
  • 2 Clinicians conferences and a combined Family and Clinician conference have now been held.

Promoting Research:

  • FA patients, their families and relatives have helped fundraise for Fanconi Hope to allow us to donate over £80,000 to UK Fanconi Anaemia research projects.
  • Fanconi Hope, in conjunction with the Fanconi Anemia Research Fund, initiated and co-sponsored an International FA Gene Therapy Working Group Meeting in London in Nov 2010 aimed at expediting the transition from gene therapy research for Fanconi Anaemia into clinical trials worldwide. This was described by the host, Prof Adrian Thrasher of UCL as “a real platform for the accelerated development of collaborative clinical studies.” and a report from the meeting has subsequently been published in Nature. The Working Group Meetings, chaired by Prof Jakub Tolar, have continued on an annual basis.
  • In 2015 Fanconi Hope commenced funding of a 3 year (initially) Study into the Long Term Effects of Fanconi Anaemia led by Manchester University and funded by Fanconi Hope. This study funds a UK FA Coordinator, Beth Lee, who will create and maintain a patient-led UK National Patient Registry in order to improve patient care and facilitate research. The Coordinator acts as a point of contact for patients & families, and clinicians & researchers.

Bringing Families Together:

  • This website (fanconihope.org), our Facebook page (facebook.com/fanconihope) and Private Group (https://www.facebook.com/groups/1211836852294052/) have been established to act as a focus for all activities and to provide the means for sharing information.
  • Family Meetings have been held in the grounds of Chatsworth House and at Snibston Discovery Centre.
  • A Family Conference has been organised for Oct 14th 2017 to enable families to make contact with each other and to learn more about Fanconi Anaemia from health professionals.

Raising Awareness:

  • Members of Fanconi Hope worked closely with ITV Researchers to develop the Emmerdale storyline concerning the diagnosis of one of the characters, Sarah Sugden, with Fanconi Anaemia, bringing the condition to the attention  of over 6m viewers weekly.
  • Fanconi Hope has exhibited at and provided a level of sponsorship for, the British Society for Gene and Cell Therapy in efforts to persuade researchers to use FA as the candidate disease for their gene therapy research.
  • Fanconi Hope has raised awareness in other sections of the medical community, through bodies such as the British Society for Haematology and the British Society for Surgery of the Hand.

Further information on the Fanconi Hope Charity Organisation and Finances can be found here.

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