Chronic lymphocytic leukaemia (CLL) is the most common leukaemia in the Western world, with approximately 4 to 5 people in every 100,000 affected, but is poorly understood. A global network does not exist to share knowledge and experience or advocate for equitable standards of care. Many countries do not have community or patient groups dedicated to supporting CLL patients.
The work of the Chronic Myeloid Leukaemia (CML) Advocates Network under LePAF has led to numerous successes globally, including: the establishment of haematology standards in blood cancers, annual ‘Horizons’ meetings to encourage best practice sharing and vast improvements in patients’ understanding of clinical trials and the drug development process.
The establishment of the CLL Advocates Network (CLLAN) and commencement of the new network’s activities aims to ensure the successes seen in CML are replicated for CLL and common goals are shared
The CLL Advocates Network (CLLAN) was founded by representatives from Canada, Czech Republic, France, Ireland, Italy, Portugal, UK and the United States.
The CLL Advocates Network (CLLAN) is hosted under the umbrella of LePAF (“Leukaemia Patient Advocates Foundation”), a patient-led non-profit foundation based in Switzerland. The Foundation acts as a legal platform for self-sustained patient advocacy initiatives like the CML Advocates Network and the MPN Advocates Network. The CLL Advocates Network is the latest addition to the platform.
The CLLAN Mission is to enhance CLL patient care and improve outcomes by collaboratively:
- Acting as an international collective representative of CLL patient groups, interacting with healthcare funding, treatment approval, and treatment research organisations to improve access to novel treatments globally.
- Developing tools to empower patients to become advocates to influence policy makers and participate in health technology assessments, research and clinical trial development.
- Sharing best practices and resources between patient groups through annual meetings, education and a network website to improve CLL knowledge and awareness.
- Ensuring every patient has access to quality resources and support by engaging existing patient organisations to become network members and provide guidance on patient organisation development in countries currently under-supported.
The CLL Advocates Network’s immediate goals include:
- Connecting across the globe with:
– CLL patient groups
– CLL patient advocates
– Patient organisations supporting blood cancer patients including CLL.
- Hosting the first CLL ‘Horizons’ conference in Belgrade, Serbia, from 11th – 13th November 2016
- CLL is the most common leukaemia in the Western world, with approximately 4 to 5 people in every 100,000 affected, but is poorly understood.
- Many countries do not have community or patient groups dedicated to supporting CLL patients.
- A global network does not exist to share knowledge and experience or advocate for equitable standards of care.
- Networks established for other diseases have led to numerous successes globally, including the establishment of treatment standards, vast improvements in patients’ understanding of clinical trials and the drug development process, and the facilitation of key knowledge sharing.
We want to see these same successes for CLL.
The CLL Advocates Network (CLLAN) was founded by representatives from Canada, Czech Republic, France, Israel, Portugal, UK and the United States. The CLL Advocates Network Steering Committee consists of the following 8 members, of which 3 are CLL patients and one a carer. The other members are patient advocates and advocates from patient organisations with CLL support in their remit.
CLLAN Steering Committee
Nick is a UK CLL patient, and a Campaigns and Advocacy Officer at Leukaemia Care, working on:
- Primary Care Awareness Raising & Education
- On-line Peer to Peer Support
- CLL Health Technology Appraisals
- Patient Experience
- Cancer Policy
- Campaigns – Spot Leukaemia, Watch Wait Worry, My CNS Matters
- Patient advocacy
Nick is a consumer member of the UK CLL biobank & NCRI CLL clinical study sub group steering committees.
Leukaemia Care is dedicated to ensuring that anyone affected by leukaemia receives the right information, advice and support.
Support is offered over nine key areas:
- Helpline (08088 010 444)
- Information booklets
- Leukaemia Matters Magazine
- Nurse Advisor
- Nationwide support group network
- On-line peer to peer support groups
- Patient and Carer conferences
- Nurse & Primary Care Education
- Campaigning and Patient Advocacy
Leukaemia Care offers this support through our head office, based in Worcester and a network of staff and volunteers all around the United Kingdom. We also undertake wider policy, campaigns and advocacy work. Priority areas include early diagnosis, awareness and patient experience. Another key area of our work is representing the patient voice in Health Technology Appraisals.
For more information, see: www.leukaemiacare.org.uk
At the end of 2015, I have been nominated as a member of the board of directors of the association SILLC, the purpose of which is to support the CLL and Waldenström patients in France (information meetings, advices, surveys, relationship with doctors, hospitals, public authorities, drug producers,…)
Since I was active in international businesses before I retired and hence used to intercultural issues and approaches, I am now in charge of the international relations of SILLC.
It is an important challenge, when international advocacy associations are establishing in the LLC field, allowing now worldwide best practise sharing and benchmarking.
LePAF Rep., Czech Rep.
Jana Pelouchova is a chronic myeloid leukemia patient on treatment for 14 years. Challenges of living with CML lead her in 2006 to become a founder and chairperson of Diagnoza CML patient organisation in the Czech Republic, in 2014 evolving into Diagnoza leukemie patient society, addressing patients with all types of leukemias. In 2015 the society has started building a “virtual library of CLL patient” – information portal for Czech speaking CLL patients.
The need for sharing and learning experiences in advocacy was behind her becoming a co-founder of the CML Advocates Network and of the Swiss-based Leukaemia Patient Advocates Foundation. Recently, becoming a member of the Steering Committee of the newly established global network CLL AN.
Jana is an elected Board Member of the European Cancer Patient Coalition, based in Brussels and the ECPC Secretary for the second election period, since 2011. As a rare cancer advocate she is also involved in the RARE CANCERS EUROPE multi stakeholder platform. For a second election period she is a member of ECCO PAC (Patient Advisory Committee). Besides access to therapies hemato-oncology she is focused on patient education and adherence to oral anti cancer drugs. She has twice been invited as patient expert to participate in the Scientific Advisory Committee of EMA.
Michael lives in Dublin with his wife, Jan, and four children. Jan is a CLL patient whose journey with CLL began in 2011 at the age of 39. They realised at that time that they needed to get informed in order to get the best treatment plan available.
Michael and Jan along with other CLL patients have set up a working group to establish CLL Ireland to help other patients affected with CLL and raise awareness .
Michael strongly believes in patient advocacy and the sharing of information with a view to better treatments and prognosis for CLL patients.
Felice Bombaci was diagnosed with Chronic Myeloid Leukemia (CML) in March, 2000. In August 2000 he joined the IRIS study, which demonstrated the effectiveness of Imatinib, the drug that changed the history of CML. In 2009, Felice founded the Italian Association against Leukemia, Lymphomas and Myeloma (AIL) CML Patients Group, which is part of the CML Advocates Networks. AIL’s main goals are: to promote research; to provide housing assistance, homecare and financial support for those in need; to enhance patients awareness.
In 2015, Felice was appointed coordinator of all AIL’s patient groups and he is now involved in the growth of other patient groups diagnosed with blood cancers.
He is a member of advisory boards on blood cancers topics and is a member of the Steering Committees of CLLAN and MPNAN.
United States of America
Dr. Koffman, a well-known doctor, educator and clinical professor turned patient has dedicated himself to teaching and helping the CLL community since his diagnosis in 2005. Dr. Koffman believes that his dual status as a physician and patient provides a unique experience and understanding which allows him to provide clear explanations of complex issues and to advocate for his fellow patients and inform his fellow healthcare providers. Besides his medical degree, Dr. Koffman has a Master of Science in Medical Education. Dr. Koffman is also a practicing family doctor, board certified in Canada and USA, a retired clinical professor in family medicine at the Keck School of Medicine, USC, and the former medical director of the nonprofit medical educational organization, Primary Care Network. Dr. Koffman serves as the unpaid medical director of the nonprofit CLL Society Inc. that is dedicated to the unmet needs of the CLL community (http://cllsociety.org) and is a popular blogger about cancer (http://bkoffman.blogspot.com).
Diagnosed with CLL in 2004, Deborah Baker was told by her family doctor that she had the ‘good’ cancer and not to research on the internet. She became an advocate for CLL patients as a founding member of the Chronic Lymphocytic Leukemia Patient Advocacy Group (CLLPAG) cllpag.ca. She has been a Co Chair, Chair and Acting Chair of the Board since CLLPAG formalized in 2007. Deborah built the CLLPAG members database into a tool that is used for surveying International CLL Patients and their caregivers to prepare patient submissions for drugs to pan Canadian Oncology Drug Review (pCODR) and Institut national d’excellence en santé en services social (INESSS) in Quebec. She initiated the E-Bulletin that is sent to CLLPAG members.
She has been on the organizing committee of all five International CLL Educational Conferences presented for CLL Patients, their caregivers and Health Professionals in cooperation with Juravinski Cancer Centre, Hamilton, Ontario and The Leukemia & Lymphoma Society of Canada and/or Lymphoma Foundation Canada (now Lymphoma Canada).
She hopes to ensure Canadian patients have access to International information and standards for CLL by being a member of the CLLAN Steering Committee.
The Leukaemia Patient Advocates Foundation (LePAF) is a patient-led non-profit foundation in Switzerland. Its mission is to improve the lives and survival of patients affected by leukaemia as well as their relatives by supporting leaders in providing help and support. It is a platform for discussions and best practice sharing to leukaemia patient groups worldwide.
The foundation collaborates with all stakeholders involved in research, treatment and care of leukaemia patients. The foundation acts as a platform for patient organisations – concentrating on educating, connecting and supporting patient group leaders rather than services to patients.
The LePAF mission:
- Improving the lives and survival of patients affected by leukemia as well as their relatives.
- Establishing a platform for discussions and sharing to leukemia patient groups worldwide.
- Collaborating with all stakeholders involved in research, treatment and care of leukemia patients.
- Acting as a legal platform for self-sustained patient advocacy initiatives like the CML Advocates Network, the CML Horizons conference and the MPN Advocates Network. The CLL Advocates Network is the latest addition. The foundation acts as a platform for patient organisations – concentrating on educating, connecting and supporting patient group leaders. These leaders can use the knowledge and experience they get through CLL AN activities like the planned first CLL Horizons to support CLL patients in their countries. These leaders can use the knowledge and experience they get through CLL AN activities like the planned first CLL Horizons to support CLL patients in their countries.
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