CML Advocates Network

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.

At 24th of June 2009 a new campaign European Action Against Rare Cancers has been launched. The new campaign urges European policy-makers to prioritise better treatment and care for patients with rare cancers within the framework of the new Commission Communication on cancer and other recent policy initiatives such as the Council Recommendation on Rare Diseases. The CML Advocates Network is one of the supporting organisations. The campaign has launched a Call to Action – an international petition appealing to all stakeholders to initiate targeted actions to address the challenges of rare cancers.

Every year, around the day of St Nicholas in December, hematologists from around the world meet at the annual congress of the American Society of Hematology (ASH). It has become the most important event for this profession. This year, around 23.000 experts from more than 100 countries met in December 2008 at San Francisco for the 50th "ASH Annual Conference" to share knowledge about the latest results in research on leukemias. We've also had the chance to join this year, and we'd like to share our subjective impression on progress in CML therapy. An impression from a layman perspective.

Press Release - More than 50 organisations supporting patients with chronic myeloid leukaemia have signed the "Baveno CML Declaration" in 2008 to call for improved access to cancer treatment and better adherence to international treatment guidelines.