Welcome to the CML Advocates Network!
We are a worldwide network of non-profit organisations supporting patients with Chronic Myelogeneous Leukemia (CML) and their relatives. We do this by sharing knowledge and best practice, running joint campaigns, and educating advocates how to build and grow patient organisations. The network is run by volunteers who are CML patients.
Like every year, about 30.000 physicians, researchers and industry representatives from all across the world met in the US to discuss groundbreaking news in leukemias and other hematologic diseases. While "the ASH" is designed to be a meeting exclusively for health professionals, about 30 patient advocates representing patients with e.g. CML, myeloma and lymphoma attended to follow, discuss and disseminate the news.
From 24-26 September 2010, the iCMLf-ESH conference on Chronic Myeloid Leukemia (CML) brought together around 400 CML experts from all across the world in Washington DC. Speakers and audience discussed the biological mechanisms of the disease and its treatment, and also about news from clinical trials with 3rd generation therapies.
The "CML Advocates Network" has received the "ESO Cancer on Internet Award 2010" at the UICC World Cancer Congress in China on 19 August 2010. The focus of this year's award provided by the European School of Oncology (ESO) is on e-cancer patients. It has the aim to raise awareness of the evolution of the internet and the impact of social media networks in the cancer patient community by recognising organisations and groups that have provided quality-based and easy-to-use communication platforms through the Internet.The prize of 4.000 EUR will be used to extend that social media functionality of the website which is based on free software and is run by volunteers.
On 9-11 April 2010, cancer advocates working in Asia witnessed a new beginning: the first conference for CML advocates in the region, Rising Sun, conveyed in Hong Kong. This unprecedented event was a "dream come true" for many of the participants.
Representatives from China, Hong Kong, Indonesia, Malaysia, India, Japan and the Philippines, joined by advocates from New Zealand, Australia, US and UK, spend two days getting to know each other, sharing best practices, and learning from each other. People who up to now had lived parallel lives without knowing each other, finally had the chance to meet in person and develop tight connections.
"Actually, why do I always spend St Nicholas in the US, instead of with my family", I asked myself when I boarded the plane to the USA on 4 Dec, in anticipation of a boring 16 hour trip to New Orleans, arriving jetlagged, hiding for days in the dungeons of a large convention center, lacking any sense of the city I am in. Year by year, more than 20.000 hematologists and healthcare people attend the annual meeting of the American Society of Hematology, lovingly called 'the ASH' by repatriates. Its publications are all available on the Internet. "Is it really worth the effort being there again, instead of just using my browser?", I thought. It is. Definitely.
The 7th annual international "New Horizons Conference for Organisations Representing People with CML or GIST" was held this year in Lisbon, Portugal from June 26 to 28. Sponsored by Novartis and held for the seventh year, the conference once again demonstrated the value of bringing together patient advocacy groups from around the world to share their ideas and experiences and to get latest updates from medical professionals. The conference featured 30 hours of presentations from a dedicated and enthusiastic faculty of various disciplines and stakeholder groups.