Please contact us if you want your organisation to be included!
WMUK Online Forum.
Simply send us an email to join this friendly community. Invaluable for the newly diagnosed. About 120 members, but we want many more! Ask even the most simple questions! Not for selling or commercial use. Currently run as a Yahoo! group but will gradually migrate to this website forums area.
IWMF: International Waldenstrom’s Macroglobulinemia Foundation
An invaluable source of information and leaflets. They will send you a most impressive pack by post, free of charge, and also have a doctor pack, or we can order one for you. 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 May - Tampa in 2014 - 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 world (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 Lifeline list.
Ken Rideout +44 1278 782108
PLASMAPHERESIS/ CLADRIBINE/STEM CELL TRANSPLANT
Roger Brown +44 (0)117 3735733
Terry Betts +44 01992 583643
Nigel Pardoe +44 0208 326 3270
|Website: www.iwmf.com||Email: firstname.lastname@example.org|
WMUK and IWMF are very keen to have many more UK volunteers for other therapies and complications who are happy to speak to fellow patients online or by phone.
IWMF International Talk List
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.
Bing Centre for WM
The Bing Centre at the Dana-Farber Institute (part of Harvard University) produces 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. The Bing Centre also organises the International WM Workshops for Doctors. This year it is in London in August (see news). Some important papers from the Bing Centre can be found on our media centre.
European WM Network
European organisation acting as an umbrella for support groups and patients in countries with no support groups, 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. It now has a linked website which allows each EU country to have its own ‘home page’. It’s at:
Macmillan Cancer Support
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 opened in March 2012 at University College Hospital, London.
Currently provides the most up-to-date leaflet on WM and its treatment. Can be downloaded from its site or from our WMUK website.
RareConnect is a website platform supported by EURORDIS (the European Rare Disease Organisation) and NORD (the North American Rare Disease Association). It hosts many rare disease communities including one for WM.
The great advantage is that it offers translation to and from a number of European languages, allowing WM carers and sufferers from different countries to talk to each other. Its English language site is moderated by our Phil Manning.
An excellent website for French speakers. Waldenström France is very active and holds regular meetings http//portail.waldenstromfrance.org/