What is the CML Advocates Network?

The CML Advocates Network is a virtual network specifically for Chronic Myeloid Leukemia (CML) patient group organisers. It is an informal online organisation designed, published and moderated by CML patients and carers who are registered patient group advocates and organisers.

The central idea behind the CML Advocates Network was initiated in 2005 during the 4th International "New Horizons in Cancer" conference in Dublin for CML & GIST patient advocacy groups. The annual conference, which was initiated in 2002, has become a key networking event for CML and GIST patient group advocates from all five continents. Presentations by expert clinicians, medical professionals and patient group organisers 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 a patient group. The conference is increasingly of major importance in best practice and knowledge sharing between patient advocacy groups on a global level.

The CML Advocates Network was set up in 2007 to keep the international networking going also after our annual meetings, which in the past has proven to be difficult, mainly due to geographical distances between the participants.

This website was set up by four patient groups from Germany, UK, Czech Republic and Israel, facilitated by an unrestricted grant from Novartis to be able to afford the IT set-up by an independent IT service provier. It was created and is run independently by CML patients. Further maintenance and extension was funded by the co-founding patient organisations as well as through the "Cancer on the Internet Award 2010".

The website's aim is to facilitate and support best practice sharing between patient group organisers across the world. The site features a contantly updated address list of all CML patient support groups. For support group organisers and patient advocates, it features a restricted, member-only discussion forum and advocacy knowledge base.

We welcome members from all CML patient group organisations throughout the world to become part of the CML Advocates Network!

Objectives

The four main objectives of the "CML advocates network" website are:

• To provide a worldwide web directory of CML patient groups, to allow patient groups to find national support groups in another country
• To provide a platform of communication for CML patient advocates, e.g. to share best practice on cancer patient advocacy.
• To build a knowledge base in the form of a Wiki (like Wikipedia, but dedicated to CML patient advocacy)
• To provide an area where educational material is ready for download to patient advocates.

The CML Advocates Network is an informal network of patient groups, addressing those that these groups. Individual patient support as well as country-specific policy work is best being covered by patient organisations on a national level (e.g. through national patient organisations.

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.

Governance: The CML Steering Committee

The CML Advocates Network is being coordinated by an elected Steering Committe of eight patient leaders from all regions of the world.

	Anita Welborn, The Leukemia & Lymphoma Society, USA
	Bahija Gouimi, AMAL (Association des Malades Atteints de Leucémies), Morocco
	Euszebius Jan Dziwinski, Nationwide Association for CML Patients Aid, Poland
	Giora Sharf, CML patients organization, Israel (& co-founder CML Advocates Network)
	Jan Geissler, LeukaNET / Leukämie-Online e.V., Germany (& co-founder CML Advocates Network)
	Jana Pelouchová, Diagnoza CML, Czech Republic (& co-founder CML Advocates Network)
	Pat Garcia-Gonzalez, The Max Foundation, USA
	Zengshen Liu, New Sunshine Charity Foundation (Sunshine Volunteers Association), China

Audience

Visitors of of the website are

• Patient advocates leading leukemia support groups, aiming to get in touch with other national groups, and to share experience in advocacy in the member area
• Patients and their relatives, to use the public (non-member) area of the website to locate support groups, e.g. in their home country or in other countries

The website does not aim to provide information to medical professionals. Hence, the website is provided in plain, patient-friendly language, and is hesitant in using medical terms.

Features for members

The member area is only accessible to registered members and requires a login. A login account can be provided by the moderators of the website after a registration. The moderators will then check whether that the applicant is representing a leukemia patient organisation.

We are afraid we grant access only to representatives of patient organisations, not to individual patients or non-patient stakeholders. The reason is that the main goal of the network is to link up patient advocates and to facilitate best practice sharing in advocacy.

The following functionality is available to registered members:

• Discussion forums, with subforums e.g. on advocacy, on how to set up patient websites, what activities the groups have, share their successes and failours that they encounter, so all the others can learn from these experiences, etc.
• Download area for files, e.g. conference material.
• A collaborative Knowledge Base / Wiki (like Wikipedia) in the member-only area where members themselves are allowed to easily add, remove, edit and change content. The aim is to jointly build a "knowledge toolbox" of patient advocacy using collaborative knowledge.

Legal disclaimer

The maintainers of this website have no medical qualifications and the information contained on this site is not intended to replace expert medical advice that you may be given. We do our best to ensure that any information we publish is accurate and strongly advise that any decisions about your treatment should be made after discussions with your haematologist or other suitably qualified medical professional.

We are purely patient-run, non-profit and public interest. Talking to each other is always the best solution. Before taking any legal action against us for whatever reason, please contact us - we are very confident we can solve any issue in both interests without the need for any legal steps.

How to contact us

This website - and the CML Advocates Network - is formally hosted by the "Leukemia Patient Advocates Foundation", a non-profit foundation registered in Switzerland. You can get in touch with the CML Advocates Network at:

This email address is being protected from spambots. You need JavaScript enabled to view it.

You can also use the Contact us website. We're happy to receive your feedback or enquiry!

The formal responsibility of this website belongs to the following organisation:

Leukemia Patient Advocates Foundation
c/o Hans Roth

Münzgraben 6
P.O.B. 453
CH-3000 Bern 7

Switzerland

The trustees of the Leukemia Patient Advocates Foundation are Jana Pelouchová (President), Giora Sharf (Treasurer), Jan Geissler (Vice President and Managing Director), Erik Aerts.

Technology

The website was built on free software and is hosted and maintained on a low-cost basis. This was to make sure the website does not require significant funding after its initial set-up.

The website was set up using the Open Source Software Joomla. We would like to thank the enthusiasm of those engaged in Open Source Software. This project would have never happened on commercial software.