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 and is funded by Novartis, 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 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 pay for the IT set-up. It was created and is run independently by CML patients. Our 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 & Limitations

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 conference material is ready for download to the participants post the conference.

The CML Advocates Network is not a formal organisation. It is not intended to found a CML association or an advocacy organisation by itself. CML advocacy and political work is already well covered on a national level (e.g. through national organisations like DLH in Germany, CMLSupport in the UK, CMLSociety in Canada, Leukemia & Lymphoma Society in the USA) or international patient organisations like ECPC.

Hence the CML Advocates Network focuses to be a web-based directory and a self-moderated platform for knowledge sharing, not at all an organisation representing patients or campaigning by itself.

The website is not thought to provide a platform for public discussions and, lacking the staff, should be run with as little effort in maintenance and moderation as possible. Hence interactive functionality is only be offered in a non-public, member-only area which is accessible by registered representatives of CML support groups only.

Governance and Funding

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

The CML Advocates Network was founded and is moderated by voluntary representatives of the following patient organisations:

Leukämie-Online e.V., Jan Geissler, Germany
CML Support, Sandy Craine & David Ryner, UK
Diagnoza CML, Jana Pelouchová, Czech Republic
Israeli CML patients support and info organization, Giora Sharf, Israel

The CML Advocates Network does not employ any staff, does not develop own political positions. It just provides a platform for communication of CML advocates, and the moderators take the responsibility to monitor the forum to avoid any abuse.

Audience

Visitors of of the website are

CML patient advocates, e.g. those who have participated in the annual CML/GIST meetings, and other CML patient advocates leading CML support groups, aiming to get in touch with other national groups, and to share experience in advocacy in the member area
CML 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. and after the moderators have approved that the registrant is a representative of a CML patient organisation. We are afraid we cannot grant access only to representatives of patient organisations.

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

We 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 independent of and not affiliated to any pharmaceutical company, medical institution or professional organisation. The founding organisations are registered non-profit organisations in Germany, the UK, Israel and Czech Republic, and the founders are all CML patients.

Before taking any legal action, 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 is not run by a formal organisation but by a network of engaged and voluntary patient representatives. Please get in touch with us by emailing to the address:

This e-mail address is being protected from spam bots, you need JavaScript enabled to view it

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

To follow formal requirements, the formal responsibility of this site belongs to the following organisation:

Leukämie-Online e.V.
(registered as a charitable organisation in Germany)
Am Rothenanger 1b
85521 Riemerling
Germany
http://www.leukaemie-online.de

Technology

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.