The CML Advocates Network Story

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! 

Our Objectives

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. 

Our Team

The CML Advocates Network is run by the elected CML Steering Committee composed of six CML patient advocates representing the major regions of the world plus the three co-founders of the network. The management is supported by the Programme Managers.

- The CML Steering Committee -

 

 

SARUNAS NARBUTAS

Chairman of the CML Advocates Network. 

President of Lithuanian Cancer Patient Coalition (POLA).

Region Central and Eastern Europe & West Asia Representative.

 

 

 

 ZACK PEMBERTON-WHITELEY 

Treasurer of the CML Advocates Network.

Patient Advocacy Director of Leukaemia Care, United Kingdom.

Region Western Europe Representative.

 

 

 

 

JANA PELOUCHOVÁ

Co-founder of the CML Advocates Network.

President of Diagnoza Leukemie, Czech Republic.

 

 

 

 

 

GIORA SHARF

Co-founder of the CML Advocates Network.

Director of Flute of Light, Israel.

 

 

 

 

 

JAN GEISSLER

Co-founder of the CML Advocates Network.

Chair of LeukaNET, Germany

 

 

 

 

 

 

 

GAIL SPERLING

Senior Manager, Information Resource Center of the Leukemia & Lymphoma Society, USA.

Region North America Representative.

 

 

 

 

 

BAHIJA GOUIMI

President of the Association AMAL, Morocco.

Region Middle East & Africa Representative.

 

 

 

 

 

 

MERCEDES ARTEAGA

Program Officer & Regional Project Manager for Latin America at The Max Foundation, Argentina.

Region Latin America Representative.

 

 

 

 

 

 

ROD PADUA

President of Touched By Max, Philippines.

Region Asia-Pacific Representative.

 

 

 

 

 

 - The team -

 

 

CELIA MARÍN

Programme Manager of the Leukemia Patient Advocates Foundation

 

 

 

 

 

 

LIDIJA PECOVA

Programme Manager of the Leukemia Patient Advocates Foundation

 

 

 

Our Audience

Visitors 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 locate support groups, e.g. in their home country or in other countries
• Health professionals and carers who are interested in key issues of the CML patient community.

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

Most of the website's content, including news from the network, the CML glossary, the CML trial registry and CML-related information are openly accessible.

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 registration. The moderators will then check whether the applicant is representing a leukemia patient organization.

Access to the member-only area is only granted leaders of patient organizations, 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 CML advocacy. However, we invite individual patients to use our website to search for a local patient organization in their country.

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 failures that they encounter, so all the others can learn from these experiences, etc.
• Download area for files, e.g. conference material.

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 global patient-led non-profit foundation registered in Switzerland. The foundation is connecting leukemia patient organizations on all continents to strengthen their advocacy work. Its mission is to improve the lives and survival of patients affected by leukemia as well as their relatives by supporting leaders in providing help and support.

You can get in touch with us at

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
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) and 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 been possible without open source projects and their communities!