About CLL Horizons 2016

The first international conference for CLL Patient Advocates took place 11-13 November, 2016 in Belgrade, Serbia. Patient advocates from 25 different countries in five continents attended this event, to learn, share and start to think about how to help improve outcomes for CLL patients globally.

The agenda was broken up into Medical Sessions and Advocacy Sessions. The Medical Sessions covered the full pathway of the disease, from the biology behind the origins of CLL, through diagnosis, watch & wait, treatment, to relapsed and refractory patients and how they can be treated now and what may be available in the future. Our thanks to our doctors who volunteered their valuable time to educate us at CLL Horizons 2016: Prof. Chris Fegan; Dr. Arnon Kater; Dr. Ben Kennedy; Dr. Kostas Stamatopoulos.

Advocacy topics were designed to help groups start, then manage a well-functioning patient organization. Our thanks again to the many speakers who volunteered their time to educate their global colleagues.

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CLL Horizons was also a unique opportunity for CLL patient organization representatives to meet and network, giving them the opportunity to discuss issues facing CLL patients and hopefully start to think about what they could do better to help CLL patients in their communities.

The event ran concurrently with MPN Horizons, a parallel conference for advocates and representatives of patients with myeloproliferative neoplasms (MPN). MPN is a different form of blood cancer but patients with MPN face some similar challenges as those with CLL. While the medical sessions were separate, many of the advocacy sessions were common to the two conferences, maximising the opportunities for delegates to share information and gain insights from each other.

Links to the presentations and the slides are listed below where available.

CLLAN is grateful for the support of the following sponsors:

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The agenda

Friday, 11 November

CLL 101 (pre-session) – Dr. Brian Koffman/Dr. Kostas Stamatopoulos VIDEO

Opening VIDEO

Medical session #1: CLL biology, diagnosis and prognosis

  1. Is CLL one disease? – Dr. Ben Kennedy VIDEO
  2. How is CLL diagnosed? – Dr. Kostas Stamatopoulos VIDEO
  3. Prognostics – Prof. Chris Fegan VIDEO

Advocacy session #1: Creating and managing a patient’s organization

  1. Challenges when starting out: Ireland CLL Support Group case study – Michael Rynne VIDEO
  2. An established organisation: a case study – Jon Mathias VIDEOSLIDES
  3. Vision and mission, governance, board development, liability Insurance – Lorna Warwick VIDEO SLIDES

Sunday 13 November

Medical Session #4: Relapsed Refractory Treatments & Clinical Trials

  1. R&R treatment and clinical trials – Prof. Chris Fegan VIDEO
  2. Future strategies – Dr. Kostas Stamatopoulos VIDEO
  3. Involving patient groups and patient advocates in trial design, development and delivery – Dr. Ben Kennedy VIDEO

Advocacy Session #4: Communications – Practical Aspects for Patient Organizations

  1. Social media – Jan Geissler/Sofia Sa Cardoso  VIDEOSLIDES
  2. Branding and marketing – Lorna Warwick  VIDEOSLIDES

 

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Saturday 12 November

Medical Session #2: Early management

  1. Watch & wait: when to treat, why to treat, when not to treat – Dr. Arnon Kater VIDEO
  2. Psychological impacts, management access to information and support resources – Prof. Chris Fegan VIDEO
  3. CLL and treatment related complications – management & prevention – Dr. Ben Kennedy VIDEO

Advocacy Session #2: Marketplace

  1. Fundraising – William Crowley/Werner Zinkand VIDEO
  2. Working with Pharma: benefits and pitfalls – Ananda Plate
  3. Planning a Patients Meeting – Felice Bombaci/Jana Pelouchova
  4. Peer to Peer Support – Jon Mathias/Brian Koffman

Medical Session #3: First Line Treatments & Trials

  1. 1st line treatment & trials – Prof. Chris Fegan VIDEO
  2. Treatment & trials for high risk CLL – Dr. Kostas Stamatopoulos VIDEO
  3. Clinical trial uptake and availability – Dr. Arnon Kater VIDEO
  4. Access challenges to CLL treatments and clinical trials; Lymphoma Coalition – Charlotte Roffiaen VIDEO

Advocacy Session #3: Best Practice Sharin

  1. HTA and patient group involvement – Nick York/Lorna Warwick VIDEOSLIDES
  2. Use of Surveys ‘real life’ – Pierre Aumont VIDEO SLIDES
  3. Engaging with Policy makers, healthcare providers, the clinical community and industry to improve access – Zack Pemberton-Whiteley VIDEO SLIDES

 

The Speakers

The following speakers have confirmed the participation at the 2016 CLL Horizons meeting:

Pierre Aumont

Pierre Aumont

Biography

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.

Felice Bombaci

Felice Bombaci

Biography

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.

William Crowley

William Crowley

Biography

My career in fund development and management started nearly 30 years ago. Over my career, I have managed successful direct mail fund raising campaigns, planned special events from golf outings to black tie dinners and submitted proposals to corporations and foundations, coordinated major gift and planned giving initiatives.

I have worked in big institutions including Illinois Institute of Technology, the University of Illinois at Chicago and Concordia University Chicago with significant alumni and large develop staff. I have also been in small development offices of community organizations where I was the only staff person.

Prof. Christopher Fegan

Prof. Christopher Fegan

Biography

Professor Chris Fegan qualified in Newcastle and trained in haematology in the West Midlands and Cardiff before taking up his current consultant post at Cardiff in 2005. He has a long standing clinical and research interest in CLL, in particular in apoptosis and new drug development. His research spans polymorphisms within the BCL-2 family of supergenes, the role of CD38, NF kappa-B, telomeres and T-cell specific responses in CLL.

He is currently principal or chief investigator on 20 clinical trials including three phase I studies. He is a member of the Guidelines and Clinical Trials Committees of the UK CLL Forum, as well as a former Treasurer.

Chris has published over 140 papers to date in peer reviewed journals, as well as contributing chapters in haematology textbooks and internet sites. He is currently chairman of the Haematology National Strategy Advisory Group in Wales and a regular expert medical advisor to NICE.

Jan Geissler

Jan Geissler

Biography

Jan is the Director of the ‘European Patients Academy on Therapeutic Innovation’ (EUPATI), a project funded by the Innovative Medicines Initiative (Public Private Partnership of EU Commission and EFPIA). EUPATI will develop educational material and training courses to educate patient representatives and the lay public about all processes involved in medicines development. He is also founder and managing director of Patvocates.

Jan studied at the University of Regensburg (Germany) and Aston University (Birmingham, UK), graduating with a university diploma in business. Jan then worked for the media company Bertelsmann, Germany. Emerging from his work in Bertelsmann’s Think Tank “mediaTechnologies”, he co-founded Bertelsmann’s in-house start-up BeMobile, heading product management, business development and marketing. In 2003, he joined Vodafone Group R&D where he headed business modelling teams in Germany and The Netherlands, defining the business models of cutting-edge projects connecting media and technology. He was leading multinational and multicultural innovation projects in Europe and Asia.

In 2008, he decided to leave Vodafone and focused his professional life on patient advocacy. The reason why Jan started to engage in cancer advocacy already in 2001 was that Jan received his diagnosis of a rare cancer, Chronic Myeloid Leukemia (CML) at the age of 28 years. He joined a phase I/II clinical trial and started to translate and publish medical publications into German lay language. In 2002, he founded the online patient community Leukämie-Online/LeukaNET, which is one of the most frequented online communities for leukemia patients in the German speaking Internet today. In 2007, Jan co-founded the CML Advocates Network. It today connects 100 leukaemia patient groups in 76 countries on all continents, sharing best practice in cancer patient advocacy and running joint campaigns. In 2003, he co-founded the European Cancer Patient Coalition (European umbrella association connecting more than 300 cancer patient groups) and became its first full time director 2008. He left the organisation in November 2010.

Today, he is a patients’ representative in various steering committees and advisory boards, acting e.g. as member of the European Commission Expert Groups on Rare Diseases and the European Commission Expert Group on Cancer Control, as member of the ESMO Patient Advocates Work Group, the ECCO Patient Advisory Committee, the Editorial Boards of the Journal of European CME, the Journal of Cancer Policy and the Journal of Research Involvement and Engagement, the Institutional Review Board of EORTC, the scientific advisory board of the International CML Foundation, and the External Advisory Board of the University Clinic of Jena. He also acts as an independent expert for the EU Commission.

Prof. Dr Arnon P. Kater

Prof. Dr Arnon P. Kater

Biography

Prof. Dr. Arnon P. Kater is deputy head of the Hematology department of the Academic Medical Center, University of Amsterdam. He is chair of the Dutch/Belgium HOVON CLL working group. He is a group leader/principal investigator within the Lymphoma and Myeloma Center Amsterdam (LYMMCARE).

He leads a translational research group on lymphoproliferative diseases, especially CLL which focuses on: 1. functional genomics; 2. Interaction with the tumor microenvironment; 3. Impact of the adaptive immune system. Furthermore, he is PI of both phase 1, 2 and 3 clinical trials testing novel agents in both frontline and relapsed CLL.

Arnon Kater studied medicine and obtained his PhD and his specialty in Internal Medicine and Clinical Hematology at the AMC and worked as a research fellow at the Moors Cancer Center, University of California San Diego, USA.

He has published more than 65 papers, mostly on CLL, and is a regular reviewer for Blood, Leukemia and Haematologica.

Dr Ben Kennedy

Dr Ben Kennedy

Biography

During the 1990s, Dr Kennedy was a Research Fellow in CLL and Lymphoma at Leeds University under Professor Peter Hillmen, having been introduced to CLL years before by Dr David Oscier and the late Professor Terry Hamblin when he was a Haematology Registrar in Bournemouth.

In 2002 Dr Kennedy was appointed Consultant Haematologist at the Leicester Royal Infirmary. He has sat on the UK CLL Forum Executive Committee since it was conceived and was secretary to the forum for many years. Dr Kennedy was also secretary to the NCRN CLL clinical trials subcommittee and continues to sit on this committee helping to shape future clinical trials in the UK.

Dr Kennedy’s clinical practice is exclusively lymphoid malignancy including CLL, Hodgkin and Non Hodgkin Lymphoma. He was Chair of the Leicestershire and Northamptonshire Lymphoma MDT from 2005 to 2012. and has published widely and co written international guidelines on the use of alemtuzumab in CLL.

Dr Kennedy works with the European School of Haematology at international events studying communication problems between doctors and patients. He was Head of Laboratory haematology at UHL 2002 to 2009 and Head of Department of Haematology 2009- 2012.

Dr Brian Koffman

Dr Brian Koffman

Biography
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).
Jon Mathias

Jon Mathias

Biography

Jon Mathias is an MPN patient, diagnosed in 1998 with Essential Thrombocythaemia. Jon is the patient Chair of the UK patient support group, MPN Voice and one of the founders of MPN Advocates Network, an organisation created to encourage and enable collaboration between patient groups around the world and to give MPN patients a consistent and concerted voice.

Jon lives in London with his wife and daughters.

Jana Pelouchova

Jana Pelouchova

Biography

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.

Zack Pemberton-Whiteley

Zack Pemberton-Whiteley

Biography
Zack Pemberton-Whiteley is the Head of Campaigns and Advocacy at Leukaemia CARE, a UK based blood cancer support organisation, founded in 1969. Having graduated with a first-class degree in Law, Zack joined Leukaemia CARE’s in 2014. As Head of Campaigns and Advocacy since June 2015, he now heads up their involvement in cancer policy, cancer campaigning and individual patient advocacy (helping individual patients secure access to appropriate treatment, testing and support). He also works extensively in health technology appraisals across the UK, representing Leukaemia CARE in their involvement with the National Institute of Health and Care Excellence (NICE), the Scottish Medicines Consortium (SMC) and All Wales Medicines Strategy Group (AWMSG).
Ananda Plate

Ananda Plate

Biography
No biography available at the moment.
Charlotte Roffiaen

Charlotte Roffiaen

Biography

Since June 2015, Charlotte has been the Regional Director of the Lymphoma Coalition Europe, which counts 35 member organisations in 27 EU and non EU countries. Charlotte is in charge of implementing LC’s mission in the region contributing to produce accurate lymphoma facts and statistics; building capacity for lymphoma organisations in Europe and in Israel; improving awareness and understanding of lymphomas; and coordinating a cohesive advocacy activity.

She has been working for non-profit organisations since 2001, first as Director of Active Citizenship Network, a European organisation focusing on citizens and patients’ rights, and then as Consultant on European Strategy for several NGOS, including the Collectif Interassociatif Sur la Santé, a French platform gathering over 40 patients and healthcare users’ organisations.

Charlotte Roffiaen is a former lawyer specialised in EU law.

Michael Rynne

Michael Rynne

Biography

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.

Michael Rynne
Caregiver

Sofia Sá Cardoso

Sofia Sá Cardoso

Biography

Degree in Pharmaceutical Sciences and MBA with specialization in Marketing.
Executive Director of the Portuguese Association against Leukemia, a Portuguese NGO operating in the blood cancer area.
Activist in Patient Advocacy, Fundraising and Institutional relations.
Prior professional experience in Marketing, Communication and Strategy, on the Pharmaceutical Industry, Insurance market and Education field.

Dr Kostas Stamatopoulos

Dr Kostas Stamatopoulos

Biography
Kostas Stamatopoulos is the Director of the Institute of Applied Biosciences at CERTH, the Center for Research and Technology Hellas, in Thessaloniki, Greece. He also holds the positions of Visiting Professor in Lymphoid Tumor Biology at Uppsala University, Uppsala Sweden; and, Research Collaborator of the Hematology Department and HCT Unit at the G. Papanicolaou Hospital, Thessaloniki, Greece. Dr. Stamatopoulos has been involved in CLL and lymphoma research since 1994 and has published extensively about the immunobiology of CLL and other lymphomas. He is Board member of ERIC, the European Research Initiative on CLL, founding member of the IMGT CLL-DB initiative and the IgCLL group, both operating under the auspices of ERIC. His current research interests include: immunogenetics of human lymphoid malignancies; cell signaling; genetic diagnostics; precision medicine in cancer; and, patient empowerment in care.
Lorna Warwick

Lorna Warwick

Biograpy
Lorna has successfully held senior leadership roles in a number of national Canadian charities over the past twenty years, and has a diverse background in strategic planning, fundraising, communications, and mission development.  Lorna currently works for Lymphoma Canada as National Director, Education & Services and is also a volunteer member of the board of the CLL Patient Advocacy Group (CLLPAG). She has a stellar reputation and is frequently asked to present on the emerging trends and critical issues in the Canadian lymphoma landscape.
Nick York

Nick York

Biograhy
Nick Is a CLL Patient Advocate, and was diagnosed with CLL in 2009. Nick is an active trustee of the UK CLL Support Association and provides leadership to several working groups of patient advocates that focus on: patient group involvement in HTA, clinical trials development and the enhancement of on-line resources to support patients and their families. Nick is founder and co-administrator of the international CLL Support on line community: https://healthunlocked.com/cllsupport and also supports those affected by CLL and other chronic blood cancers through traditional methods at UK local and regional in person peer to peer support group meetings.

Further information

For general information about CLL Horizons 2016, please contact info@clladvocates.net

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