CLL Horizons 2016

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.

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.

 

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 VIDEO – SLIDES
  3. Vision and mission, governance, board development, liability Insurance – Lorna Warwick VIDEO – SLIDES

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 Sharing

  1. HTA and patient group involvement – Nick York/Lorna Warwick VIDEO – SLIDES
  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

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  VIDEO – SLIDES
  2. Branding and marketing – Lorna Warwick  VIDEO – SLIDES