Umbrella Organization of European Waldenström patient supportgroups and patients
EWMnetwork Affliiates'Meeting 2013, Saturday March 16th 2013,
15.00-17.00 hours (including an informal chat after the meeting) at the Thistle Euston Hotel, Cardingtonstreet, Euston, London NW1 2LP.
An agenda and more details of this Affiliates'Meeting will follow later on this website.
Robert Pleticha from Eurordis will give a presentation about WM on line community.
For more information mail info@ewmnetwork.eu.
The 4th International WM Patient Forum, Sunday March 17th 2013,
09.00-16.00 hours at the Royal College of General Practitioners, 30 Eurston Square, LondonNW1 2FB.
For more information see www.wmuk.org.uk or write to info@wmuk.org.uk.
Waldenström's Macroglobulinemia (WM)
Waldenström's Macroglobulinemia is a rare form of blood cancer. It affects plasma cells in the lymph nodes and the bone marrow. In WM abnormal plasma cells multiply out of control and produce excessive amounts of antibodies called macroglobulins or IgM. Excess IgM in the blood causes hyperviscosity (thickening) of the blood. This can be the cause of various symptoms. Some patients however do not experience symptoms.
WM is a serious disease, but slow moving. Most treatments are directed at symptoms. Waldenström's Macroglobulinemia is classified as an "orphan" disease. Orphan diseases are so rare that few, if any funds are available for research. Current treatment options for WM are based on research into similar disorders, such as chronic lymphocytic leukemia and multiple myeloma.
More information about treatment of WM you can find via “Treatment of Waldenström Macroglobulinemia” in this website.
More information about treatment of WM you can find via “Treatment of Waldenström Macroglobulinemia” in this website.
More detailed information about WM and WM patient support organisations you can find via "Useful addresses" in this website.
Why EWMnetwork ?Waldenström´s Macroglobulinemia (WM) is a very rare disease, so co-operation between the WM patient support organisations in different European countries is very important to make the voice of WM patients heard in European politics and health institutions/ organisations.
EWMnetwork is an umbrella organisation for European WM patient support groups or patient support organisations.
EWMnetwork was initiated in 2008 by the Dutch MM&WM Patient Association (CMWP), The Netherlands and is registered as a not-for-profit organisation under Dutch Law.
EWMnetwork aims to represent the interests of WM patients on a European level. It is an organisation run by patients and their relatives for patients (“Patients for Patients”).
EWMnetwork emphasizes on
- accessibility to treatment and medication,
- accessibility to information on new and current trials,
- stimulating research into new methods of treatment and medication.
Contacts and exchange of information between WM patient support organisations within and outside Europe are very important for realizing the objects.
EWMnetwork is still a young organisation. Started in 2008, there are contacts now in 11 countries: Belgium, Denmark, Finland, France, Germany, Greece, Ireland, The Netherlands, Sweden, Switzerland and UK.
All WM patient support organisations in Europe ( or groups or individuals if there is not yet a patient support organisation in their country) are invited to become an affiliate of EWMnetwork. There are no costs to it.
NewAll WM patient support organisations in Europe ( or groups or individuals if there is not yet a patient support organisation in their country) are invited to become an affiliate of EWMnetwork. There are no costs to it.
EWMnetwork's Annual Report 2012: see Newsletter, Annual Report
Update on WM 2012 by Dr. Shirley D’Sa can be found at http://bit.ly/P2dXu6
INTRODUCTION
Waldenströms macroglobulinaemia (WM) is a rare B cell non-Hodgkin’s lymphoma (NHL) in which the tumour cells produce a protein called IgM. It is one of 60 different types of lymphoma that are cancers that arise from cells of the immune system known as lymphocytes. WM has a lot in common with other B cell NHL but also many significant differences which require special consideration during diagnosis and treatment. The biology of the disease is distinct from other subtypes of lymphoma. These important issues have been the focus of attention at a series of International Workshops that have been held since 2000, the most recent being in Newport, Rhode Island, USA on 23-26 August 2012. This article describes some of the recent advances that were presented at Newport 2012.
Award for Lia van Ginneken
The Dutch Foundation "Stichting Eerlijke Geneesmiddelen Voorziening"(Fair Supply of Medicines) has awarded the chair of EWMnetwork Lia van Ginneken with the "Cees van Bezooijen Award". She was awarded for her great efforts in promoting patient rights and access to treatment in Europe and the Netherlands during the last eight years.
The Dutch Foundation "Stichting Eerlijke Geneesmiddelen Voorziening"(Fair Supply of Medicines) has awarded the chair of EWMnetwork Lia van Ginneken with the "Cees van Bezooijen Award". She was awarded for her great efforts in promoting patient rights and access to treatment in Europe and the Netherlands during the last eight years.
Awards for Dr. Veronique Leblond and Dr. Pierre Morel
At the 7th International Workshop on Waldenström's Macroglobulinemia two members of the EWMnetwork Medical Advisery Board were awarded with prizes: Dr. Veronique Leblond was the recipient of the 2012 Waldenstrom Award, Dr. Pierre Morel was the recipient of the 2012 Robert Kyle Award.
At the 7th International Workshop on Waldenström's Macroglobulinemia two members of the EWMnetwork Medical Advisery Board were awarded with prizes: Dr. Veronique Leblond was the recipient of the 2012 Waldenstrom Award, Dr. Pierre Morel was the recipient of the 2012 Robert Kyle Award.
Gene Mutation Responsible for WM identidied by Dana-Farber Researchers
Researchers at Dana-Farber Cancer Institute have identified the first gene mutation that may characterize the vast majority of Waldenstrom's macroglobulinemia (WM) cases. See Dr. Steve Treon's Powerpoint Presentation below.
For more information click here for the page "News".
Researchers at Dana-Farber Cancer Institute have identified the first gene mutation that may characterize the vast majority of Waldenstrom's macroglobulinemia (WM) cases. See Dr. Steve Treon's Powerpoint Presentation below.
For more information click here for the page "News".
WM Community is on line !!
This is the link to find the site http://www.rareconnect.org/en/community/waldenstrom-macroglobulinemia. Here you can learn more about WM, discuss with other patients and find information and resources.
This is the link to find the site http://www.rareconnect.org/en/community/waldenstrom-macroglobulinemia. Here you can learn more about WM, discuss with other patients and find information and resources.
Coming events:
- IWMF Ed Forum, San Diego, Ca, 17-19 May 2013. For more www.iwmf.com.
- Symposium on WM in the Netherlands ( Dutch speaking), Saturday 13 April 2013, information www.cmwp.nl.
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