Welcome to the ECWM patient site!

 

Dear Patients, 

We would like to inform you today about a new and important research project focusing on the familial occurrence of Waldenström’s macroglobulinemia (WM). The aim of this project is to gain a better understanding of the genetic and biological factors involved. In the long term, this research seeks to contribute to improved early detection, a deeper understanding of the disease, and better treatment options for WM.

Below you will find further details about this project:

 

 

 

 

 

 

Project Title: Understanding Lymphoma in Families

Description

This research study aims to understand why Waldenström macroglobulinemia (WM) and related lymphomas occur in some families and how these diseases develop over time. By studying families affected by WM and other B-cell lymphomas, we hope to identify inherited risk factors and early warning signs using simple blood tests.

The goal of this study is to improve early detection and help doctors better understand how these diseases progress, leading to better care for patients in the future.

How can I help?

You can help by taking part in this study. Participation involves giving a small blood sample and sharing basic family health information.

If you are a WM patient and have a relative with WM or with another type of B-cell lymphoma, we would like to hear from you. Your involvement could help improve understanding, diagnosis, and care for future patients.

 

Please contact us if you are interested in participating or learning more.

We sincerely thank you for your trust and support and hope to work together with you to make an important contribution to research in Waldenström’s Macroglobulinemia.

 

info@ecwm.eu

 

 

 

 

 

The latest edition of The Torch is out! This issue features a recap of the recent ECWM meeting in Chantilly and a spotlight on the inspiring Waldenström group from Germany – Waldenstrong.

 

Click here to read the article

 

A new issue of the Torch is now available! You can read about the IWWM-12 meeting in Prague, about the European WM Patient Forum, about pleural effusion in WM, about the ECWM and about many many more! 

 

Please click here to see the latest TORCH

The International Waldenstrom's Macroglobulinemia Foundation (IWMF) attended the 12th International Workshop on Waldenstrom's Macroglobulinemia (IWWM), held in Prague on October 17-18, 2024.

 

During this significant event, the IWMF spoke with Professor Christian Buske, a leading Waldenstrom’s Macroglobulinemia (WM) expert from the University Hospital Ulm, Germany.

 

Watch Video here

 

 

The WM-VOICE study is scientific research about Waldenström macroglobulinemia (WM). The study focuses on what patients with Waldenström value most in their treatment. Researchers from the hematology department of Amsterdam UMC are conducting this study, in collaboration with Waldenström experts and patient organizations from the United Kingdom, the United States of America, Australia, Canada, and the Netherlands. The study is funded by the International Waldenstrom’s Macroglobulinemia Foundation (IWMF). This study is non-commercial. No pharmaceutical companies are involved in this study.

 

 

 

Lets work together to understand rare diseases such as WM better!

 

Please click here to see further information

We need you to keep CART-WHEEL in motion

 

Our questionnaire collects information from people all over the world, so we can build a rare tumor database to address some of the barriers facing effective research into rare types of tumors.

 

CART-WHEEL.org is designed to collect information from people such as you, who have rare cancers/tumors. Using the CART-WHEEL rare tumor database, people from all over the world are able to register and fill out a privacy-protected, internet-based questionnaire which covers information ranging from your tumor type and treatment received, to aspects of your family history. (www.cart-wheel.org)

 

Lets work together to understand rare diseases such as WM better!

 

Please click here to see further information

Ambition, Devotian and making a Difference by Lisa Marie Kaiser article published in the IWMF patient magazine "torch" for people suffering from Waldenström's disease (WM) (article on page 6).

 

AMBITION, DEVOTION, AND MAKING A DIFFERENCE