Search Results

Call for Participants in Study of Early Detection of Oral Cancer in FA Patients.

If you or someone in your family with FA is diagnosed with oral cancer, aged 13 or older, please consider participating in this research study. The following text has been produced by the Fanconi Anemia Research Fund. The Fanconi Anemia Research Fund recently approved a proposal submitted by a researcher at the Dental Research Institute […]

http://www.fanconihope.org/call-for-participants-in-study-of-early-detection-of-oral-cancer-in-fa-patients/

Support for Affected Patients and Families

Support services have been divided into 3 categories. Counselling and Advice (this page) Financial Support (Benefits, Entitlements and Grants): link Facilities, Days out, Holidays etc available free of charge: link Counselling and advice There are many options available for free counselling and advice in the UK, including the following: Your GP The Fanconi Anemia Research Fund’s (FARF) family support […]

http://www.fanconihope.org/families-and-affected-individuals/support/

Fanconi Hope Announces Appointment of New UK FA Coordinator

  Fanconi Hope has taken an important step forward in support of improved care for the Fanconi Anaemia (FA) community in the UK by funding a long term study through Manchester University called: “Observational study for long term health implications of individuals affected by Fanconi Anaemia”. One of the first activities in this study, which started in […]

http://www.fanconihope.org/2016/07/18/fanconi-hope-announces-appointment-of-new-uk-fa-coordinator/

UK FA Liaison and Research Coordinator

Fanconi Hope has taken an important step forward in support of improved care for the Fanconi Anaemia (FA) community in the UK by funding a long term study through Manchester University called: “Observational study for long term health implications of individuals affected by Fanconi Anaemia”. One of the first activities in this study, which started in May […]

http://www.fanconihope.org/families-and-affected-individuals/uk-fa-liaison-and-research-coordinator/

International FA Gene Therapy Working Group – 5th Meeting: 2014

The 5th International Fanconi Anaemia Gene Therapy Working Group Meeting, co-sponsored and organised by Fanconi Hope and FARF, and chaired by Prof Jakub Tolar, was held on 16th Oct 2014 in Milan, at the Sheraton Milan Malpensa Airport Hotel & Conference Centre.     Agenda Fanconi Anemia Gene Therapy International Working Group 10/16/2014 10:30 – 14:30 PM    Sheraton […]

http://www.fanconihope.org/clinical-network/international-fa-gene-therapy-working-group/international-fa-gene-therapy-working-group-5th-meeting-2014/

Keeping Track of Blood Counts

Keeping track of blood counts following diagnosis and prior to bone marrow transplantation is important. In addition, if you decide to use Danazol to boost blood counts in the pre-transplant phase, Prof Helmut Hanenberg in the US would very much like you to be part of his long running study into the effects of this […]

http://www.fanconihope.org/families-and-affected-individuals/keeping-track-of-blood-counts/

Gene Therapy

We are now moving into an exciting new phase in the development of gene therapy as a radically-improved treament option for FA as we now transition from research into the clinical trials phase after many many years of unrequited promises. The promise that gene therapy holds is to treat bone marrow failure, prevent leukaemia, reduce incidence of […]

http://www.fanconihope.org/families-and-affected-individuals/gene-therapy/

Nutrition and Dietary Advice

  Advice on nutritional problems for patients with Fanconi Anaemia: Fanconi Hope Information Sheet: link Presentation given by Carol Ceresa, San Francisco VA Medical Center, US at a meeting for Adults with FA, on October 26-29, 2012 in Texas. link

http://www.fanconihope.org/families-and-affected-individuals/medical-advice-from-qualified-medical-sources/nutrition-and-dietary-advice/

Facilities, Days Out, Holidays etc

Wish Granting Organisations Make a Wish Foundation UK: Make-A-Wish grants magical wishes to children and young people fighting life-threatening illnesses. Make-A-Wish was founded in the UK in June 1986 and, since then, we have granted over 5,300 wishes. At any given time, over 20,000 children in the UK are living with life-threatening conditions and our […]

http://www.fanconihope.org/families-and-affected-individuals/support/facilities-days-out-holidays-etc/

Benefits, Entitlements and Grants

Our role in Fanconi Hope is to help guide people towards organisations that specialise in the right type of support. Organisations that can help with Benefit Claims It is certainly the case that the benefits system has been tightened up as of late 2012, and we have evidence from one of the hospitals involved in disability living allowance […]

http://www.fanconihope.org/families-and-affected-individuals/support/benefits-and-entitlements/
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