Welcome to the Leading UK Charity for Histiocytosis Research

HISTIOCYTOSIS FAMILY DAY : SATURDAY 11th JULY 2009
BIRMINGHAM BOTANICAL GARDENS



The Histiocytosis Research Trust - the UK's leading Histiocytosis charity invites you to attend our free Family Day on Saturday 11th July 2009 in Birmingham. The event will provide an opportunity for patients and families of children and adults suffering from LCH or HLH (and this family of diseases) to meet each other along with some of the UK's leading LCH / HLH specialists:
  • Dr Peppy Brock, Consultant Oncologist Great Ormond Street Hospital, London (our Trustee);
  • Dr Vasanta Nanduri, Consultant Oncologist Watford General Hospital, London (our Trustee & Executive Board Member of the Histiocyte Society;
  • Dr Johannes Visser, Consultant Oncologist, Leicester will be present.
During the day, families will have an opportunity to hear medical talks and there will be a time for a question and answer session with the experts. A member of the Trust's fundraising team will also be present to discuss opportunities for you to get involved with the Trust's work.

Most of all, we hope that this event will provide you with a chance to  make contact with other families and to help the Histiocytosis Research Trust support you.

Registration for this event is required before July 4th as numbers are limited. To register, CLICK HERE for more details.
Get Fit in 2009 and Run For the UK Histiocytosis Research Trust!

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Dear Friends and Supporters,

Get Fit and Run for us in 2009! Click here to find out some of the major Running Events in the UK and information on registering. You will be able to print off a sponsor form or if you would like to take the stress out of collecting sponsor money, click here to take you to a page which helps you create a fundraising page for your supporters to donate to your event electronically.

if you are looking to SPONSOR A FRIEND who is fundraising for the Histiocytosis Research Trust via Justgiving, you can find them HERE. 

Please Submit Your Stories For Our Website

If you would like to share your story or experience of LCH or HLH on our website, please contact us. We know that families with an initial diagnosis can often feel isolated or alone. Your experience may help others.
2009 Recycle Mobile Phones and Inkjet Cartridges

The Trust joined a recycling scheme two years ago - collecting used inkjet cartridges and old mobile phones.  If you are interested in having some freepost bags or if you work for a large company, hospital or school and get through many inkjet cartridges, we can arrange for a recycling bin - this service is free and includes a free collection service in UK. 

You can either join the scheme by contacting info@hrtrust.org (mob: 07825 416504) or directly from simon@recycle4charity.co.uk  by quoting our Charity Reference Number: C415.

Approximately £5 will be donated to the Trust for old mobile phones and £1 for every inkjet cartridge.  The scheme recycles all cartridges except Epson.  Old mobile phones are reconditioned and sold to developing countries and inkjets are recycled - so you will be doing your bit for the environment too! 

The scheme is run by recycle4charity.co.uk and incurs no cost to the Trust.  If you would just prefer some freepost envelopes, just let us know.

This scheme has raised over £600.00 to date – and we thank you for your continued support.

Featured Appeal - For Daniel

13 July 1993 – 9 September 2006

"Our beloved Daniel, son to John & Helen, and brother to Elaine, Paul & Amanda, passed away this year after a long struggle with Epstein-Barr related Haemophagocytic Lymphohistiocytosis. He fought hard and we are proud of him, and we miss him every day."

Our featured appeal is in memory of 13 year old Daniel Connacher who lost his fight to  HLH in September 2006.  We particularly welcome visitors from the Rod Stewart Cronicle who may know his mum, Helen.  Please click HERE to donate for Daniel via our online donation account at CharityChoice, or HERE to find out more about him at his memorial website.
 
        Support Our Fundraisers

Locations of visitors to this page 

 
 
Please Donate For Research

If you would like to help our cause and donate towards much needed research into histiocytosis, please send your donations to:

The H R Trust, 18 Western Road, Wylde Green, West Midlands B73 5SP, UK. Cheques should be made payable to H R Trust
 
Sell on eBay to support research

The internet auction site eBay have a service especially for charities called MissionFish that allows eBay users to donate the proceeds of ebay sales to the Trust.  We also have a wide selection of goods for sale that were donated to us for our own eBay shop. 

Click HERE to visit our shop or contact info@hrtrust.org or for more details on donating some of your own sales proceeds to the trust.
Survey of LCH
Preliminary results of the BPSU / Newcastle University LCH Epidemiological Survey in UK & Ireland (funded by the HRTrust) are available HERE. (as presented by Jane Salotti to the 2006 Histiocyte Society meeting in Argentina.
A Blood Test for LCH?
The Histiocytosis Research Trust's policy regarding a blood test for Langerhans Cell Histiocytosis (LCH) is that whilst it is a worthwhile aspiration the chances of success in the near term are small given the current level of knowledge of the biology of LCH. Such an endeavour - even with sustained parent/patient group fundraising - is likely to take a number of years.  Funding for LCH research is very scarce and if attention becomes focussed on such a very narrow area of work it will have the effect of diverting funding away from other research which may have a much higher probability of early success.  We may all then miss opportunities to discover the triggers, the underlying causes, or even a cure for the disease. Real opportunities for achieving improvements in the clinical management of patients may well be missed.

Our approach is to collect donations from families in the UK and from our partners in and other parts of the world.  When we have a sufficient funds for a research project, of the order of up to three years duration (on the scale of a research worker and consumable costs, approx £220k), we issue "A call for research proposals" to the scientific community.  The call is typically made for projects targetted at any form of Histiocytosis; favourable consideration is given to proposals linking basic and clinical science but the overriding consideration is scientific excellence.   When the proposals are received they are reviewed (on a voluntary basis) by specialist experts in a process known as Peer Review.  Our Scientific Review Board collate all the information and recommend a project, or in the worst-case scenario, judge that another call should be issued.  This process ensures that shortlisted proposals scientifically sound and the ideas are good, that the project will be conducted in reputable institutions, and the projects are likely to yield useful data.  Of course if a proposal for blood test work was received following our call, and is judged to be the best use of our scarce resources then we would fund it.