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An invaluable source of information and leaflets. They will send you a most impressive pack free of charge initially and also have a doctor pack. They rely solely on donations and memberships, so please feel free to join or donate- you can use your credit card directly. Their yearly Education Forum in the USA in late spring is well worth attending, and their magazine, ‘The Torch’ is required reading for many patients and carers. Take care when comparing blood test results as American units (particularly IgM) sometimes differ from EU/UK measurements, and the USA spells Macroglobulinanaemia differently too!
Also see their site and/or The Torch for the Lifeline list- people around the word (including UK) who will be happy to answer questions by phone or email based on their particular treatments and experiences. In many languages too! Here is their current UK Lifelline list.
Ken Rideout +44 1278 782108
PLASMAPHERESIS/ CLADRIBINE/STEM CELL TRANSPLANT
Roger Brown +44 (0)117 3735733
FLUDARABINE AND RITUXIMAB
Nigel Pardoe +44 0208 326 3270
Terry Betts +44 01992 583643
|Website: www.iwmf.com||Email: firstname.lastname@example.org|
A huge membership and very active, with quite a few UK regular contributors, but many more just read! Membership of IWMF not needed. Fast paced and you will get a lot of emails! You can opt for summaries though.
The Bing Centre at the Dana-Farber Institute (part of Harvard University) produce a useful WM emailed newsletter you can sign up to. Many regard Dr Steve Treon and his team from Dana-Farber as the ‘gurus’ for new approaches to treatment of WM.
European Organisation acting as an umbrella for support groups and patients, encouraging the development of new national support groups. It also lobbies at European level to represent WM patient interests. If you are in a country with no support group you can join as an individual and you can all sign up for an e-newsletter. Has strong links with other European rare disease and cancer organisations such as EURORDIS, ECPC and EMA (European Medicines Agency). Increasingly the availability of new therapies in UK is controlled by the EMA.
|Website: www.ewmnetwork.eu||Email: email@example.com|
Lots of information and very good leaflets on types of chemotherapy treatment such as ESHAP, R- CHOP and transplants. Will provide assistance for those in need, details of benefits and Macmillan Nurses. Part funding the new Cancer Centre to open in March 2012 at University College Hospital, London.
Currently provide the most up to date leaflet on WM and its treatment. Can be downloaded from their site or from our WMUK website.
Waldenstrom France: A good website for French Speakers