EURORDIS is a non-governmental patient-driven alliance of patient organisations and individuals active in the field of rare diseases, dedicated to improving the quality of life of all people living with rare diseases in Europe.

The European Cancer Patient Coalition is the voice of the European cancer patient community, uniquely representing the interests of all cancer patient groups from the major to the rarer cancers.

EORTC is an international non-profit organization with a scientific goal created in 1962 by European cancer specialists, one of whom was the Belgian Professor Henri Tagnon.  

The European Medicines Agency is a decentralised agency of the European Union, located in London. The Agency is responsible for the scientific evaluation of medicines developed by pharmaceutical companies for use in the European Union.

The European Society for Medical Oncology (ESMO), the leading European professional organization representing medical oncologists.

Rare Cancers Europe (RCE) has been established as a partnership of cooperating organisations that work together to place the issue of rare cancers firmly on the European policy agenda, to identify and promote appropriate solutions and to exchange best practice.

The Waldenstrom’s Macroglobulinemia program at Dana Farber Cancer Institute (DFCI) was founded in 1999 by Dr. Steve Treon with the help of patients,caregivers and DFCI scientists in an effort to advance our understanding of the cause of WM, and to pursue novel therapies. 

The Waldenström's Macroglobulinemia Clinical Trials Group is comprised of over 20 major cancer centers around the world.

The aim of Cancer World is to help reduce the unacceptable number of deaths from cancer that is caused by late diagnosis and inadequate cancer care. We know our success in preventing and treating cancer depends on many factors. 

We are a global network of worldwide not for profit lymphoma patient organisations with a Vision to free the world of lymphomas. We began in 2002 with 4 countries sharing best practices and now have a membership of 53 member organisations from 38 countries.

The International Waldenstrom’s Macroglobulinemia Foundation (IWMF) was established in 1994 for the purpose of offering educational information and caring support to Waldenstrom’s macroglobulinemia (WM) patients. Since the year 2000 we have funded research that will lead to better treatment therapies and, we hope, eventually a cure.

And DeNardis really knows of what he speaks: In 2003 at age 43, with a wife of 20 years and kids aged 16, 14 and 7, he was diagnosed with WM and told that the disease likely would kill him in a few years.

Dancing with The Good Doctor Waldenström and Where It Can Lead To

Conditions treated

Waldenström’s macroglobulinaemia, paraprotein-associated neuropathies

Service performance

Waldenström’s macroglobulinaemia: approx. 60 patients are registered in the service, either on treatment or follow-up.
Neuropathy/MGUS patients: approx. 40 patients registered and under review. Patients are seen within two to four weeks of receipt of referral, depending on the clinical urgency of the case.
 

via Clinicaltrials.gov

The 4th International Summit on WM was held March 11-13, 2011 at the Buena Vista Palace Hotel, Walt Disney World Resort, Orlando, FL. Over 300 patients, caregivers, and their families attended this 3 day conference, which included 7 sessions with 23 technical presentations from 17 faculty speakers, including 5 debates, and 6 case presentations.