About the organization
Basic details : The CML Advocates Network is an active network specifically for leaders of Chronic Myeloid Leukemia (CML) patient groups, connecting 120 patient organisations in 90 countries on all continents. It was set-up and is run by CML patients and carers. Its aim is to facilitate and support best practice sharing among patient advocates across the world.
The idea to form the CML Advocates Network was first discussed in 2005 during the 4th International "New Horizons in Cancer" conference in Dublin for CML & GIST patient advocacy groups. Since their initiation in 2002, the "New Horizons" annual conferences have become a key networking event and a platform for best practice and knowledge sharing for CML and GIST patient groups from all five continents. Presentations by expert clinicians, medical professionals and patient group organizers enable the sharing of the most up to date clinical information, of best practice in patient advocacy as well as of hands-on experience, e.g. and on how to run patient advocacy organisations. The CML Advocates Network website was then set up in 2007 to keep the international networking going also after the annual meetings, as well as to bridge geographical distances between patient leaders.
The network was initiated by four patient groups from Germany, UK, Czech Republic and Israel, facilitated by an unrestricted grant from Novartis. It is run independently by CML patients and hosted by the patient-run Leukemia Patient Advocates Foundation. The website has turned out to be a very powerful tool to support patient leaders around the world, to provide a knowledge base on CML advocacy, and to facilitate best practice sharing.
We welcome members from all CML patient group organizations throughout the world to become part of the CML Advocates Network!
Mission : The four main objectives of the CML Advocates Network are:
- To provide a worldwide web directory of CML patient groups, to allow patient groups to find national support groups in another country. Check our list of members HERE.
- To provide a platform for communication for CML patient advocates by sharing best practices on cancer patient advocacy, e.g. on the occasion of World CML Day.
- To build a CML-specific, patient-friendly knowledge base (CML glossary, Ressource and Knowledge Center on generics, Clinical Trials Database, patient-friendly summaries of ELN-recommendations in multiple languages, and others)
- To provide an area where educational material is ready for download to patient advocates.
- The website does not intend to be a platform for public discussions. Hence interactive functionality is mainly being offered in a non-public, member-only area which is accessible by registered representatives of leukemia patient groups only.
Vision : na