Fanconi Hope supports people affected by Fanconi Anaemia, a very rare inherited, life-limiting genetic condition which causes bone marrow failure in children and a predisposition to cancers in children and adults. Whilst the bone marrow failure element can be cured through bone marrow transplantation, there is still no cure for the condition itself and life expectancy is currently in the early 30's due to the very high incidence of cancers.
Due to the rarity of the condition (around 3-5 cases per million people) and the extreme seriousness of the condition people feel very scared and isolated, hence the need for the support we offer. We are helping bring people together into a community in order to share experiences and reduce the feeling of having to cope alone. We provide a website, social media groups, family meetings etc which are very much appreciated by the families we serve.
We support families through the provision of information and signposting, and help create a sense of community through holding family meetings and social media.
We raise awareness of the condition amongst the medical community to engender best practice treatment across the UK.
We fund research into better treatments for Fanconi Anaemia and for the types of cancers that patients are prone to.
We fund a patient registry to track the long term health of patients and to help establish the evidence for funding new treatments.
We work closely with international partners, in particular the US-based Fanconi Anemia Research Fund, the largest Support Group in the world, and are part of an International Family Support Group Alliance.
We are in the process of setting up a inherited bone marrow failure alliance with the Aplastic Anaemia Trust, to share experience and to strengthen our voice on policy matters. .
Although we are a very small charity we have had a big impact in our community, and we are fortunate to have the Duchess of Devonshire as our patron which serves to give us the level of gravitas that we need in order to pursue our mission.
