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. Read more

This is the biggest team we have had running in a Marathon for Fanconi Hope to date, so best of luck to all. You can read an article in the Tyrone Times today about Barry and his friends and family.

At our stand (a 3m by 3m gazebo) we will also be having a balloon raffle (rather than a balloon race), where people can buy a helium balloon to add to the balloon tree which should then ‘grow’ during the day, with the winner being chosen at the end of the day.

All Stand helpers will gain free admittance to the Event.

Chatsworth International Horse Trials 11-13th May 2012, Chatsworth, Derbyshire

Thanks to our patron, The Duchess of Devonshire, Fanconi Hope is this year’s nominated charity for the Chatsworth International Horse Trials.  Fanconi Hope will have a stand there and will be hosting a balloon race throughout the weekend to raise funds. More details

The reason for the website is to raise awareness of the disease and hopefully register a non-profit organisation soon to provide financial aid to people living with fanconi anaemia, in need of medical procedures related to FA.

Professor Lord Winston can be seen in the accompanying photo presenting the keynote speech against the backdrop of sponsors of the event.

Day 1 of the event, as is now a regular feature of BSGT Conferences,  was a Public Engagement day, with many schools represented. The Naked Scientist team were in attendance for the whole event and two of their most relevant podcasts can be downloaded here:

• Day 1: Public Engagement in Gene therapy
• 1 hour Gene and Cell Therapy special from BSGT conference, Brighton
• Further podcasts from the conference can be found here 

The Panel during Public Engagement Day, chaired by Chris Smith, one of the Naked Scientists. Professor Adrian Thrasher, President of the BSGT is seated second from left.	The Fanconi Hope Stand	School pupils engaging in a practical session

 The 2012 conference is to be held in Mar 12. Schools wishing to participate in the public engagement day should contact the BSGT

New survey investigates patients’ experiences of getting a diagnosis of a rare disease in Northern Ireland.

Rare Disease UK has been in contact with Fanconi Hope to promote a survey on rare disease diagnosis  in Northern Ireland:-

Rare Disease UK has been actively involved with the Northern Ireland Rare Disease Partnership. The Partnership, with the support of the Patient and Client Council has launched a survey which aims to capture experiences of obtaining a diagnosis of a rare disease in Northern Ireland. The survey will inform a new publication which will be launched on Rare Disease Day 2012 (29th February). This publication will be instrumental in informing RDUK’s and the Northern Ireland Rare Disease Partnership’s future campaigning work.

The survey can be filled out by a patient affected by a rare disease or a carer, but remember we are looking for responses from Northern Ireland only.

The survey is available online by visiting the following link: https://www.surveymonkey.com/s/raredisease

If you would prefer a hard copy of the survey, or if you need any further assistance in completing the survey, please contact Sarah McCandless or Richard Dixon at the Patient and Client Council -  0800 917 0222 -

The deadline for completing the survey is the 16th December.

We would be grateful if you could forward information about the survey to any contacts in Northern Ireland who you think may have an interest. The more responses we receive, the stronger the results!

Thank you for your cooperation.

Best wishes,
Stephen Nutt
Executive Officer

RDUK Secretariat
Rare Disease UK
Unit 4D, Leroy House
436 Essex Road
N1 3QP
UK.