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EHA 2018 in Stockholm, Sweden: Patient Advocacy Programme

ehaJust two weeks left until the European Hematology Association's annual congress starts in Stockholm, Sweden. Many patients of the hematology community and 17 CML patient advocates will be attending this impressive meeting from June 14-17, 2018 within more than 10.000 hematologists from all over the world.

Over the past months, the Hematology ePAG Project Management Office, coordinated by Nicole and Jan, has been working very closely with the EHA Congress office in order to make this year´s congress a success again.  

Back by popular demand again this year, we have a joint patient advocates booth of all European patient advocacy organisations as well as  “Patient Advocacy Track” session within the scientific program during the Congress. Up to 50 free congress registrations were offered to patient advocates (including 17 advocates interested in CML), so we hope there will be strong patient attendance!

Click  "Read more" to see what has been offered specifically for patient advocates, haematologists and other stakeholders at #EHA23 this year.

 

EHA23 PROGRAM AT A GLANCE May 15EHA Programme at a glance

The congress offers an extensive education and scientific program highlighting leading-edge clinical practice, recent advances, new data and views from different stakeholders and international organisations. Please click on the image to view a larger size revised EHA program at a glance.

We have made a selection of clinical and translational research abstracts, oral presentations and posters focused on Chronic Myeloid Leukemia. Please, click on the following links to check out the interesting information for CML patient advocates attending #EHA23:

EHA 2018 CML Abstracts

EHA 2018 CML Posters_Biology

EHA 2018 CML Posters_Clinical

 

Relevant sessions and meetings for patient advocates at EHA 2018 

Patient Advocacy Track

Patient Advocacy session 1: Quality of Life – why still an inconsistent path to an obvious goal?

Date: Saturday, June 16, Room K21
Time: 08:00 – 09:30
Chairs: Sophie Wintrich (United Kingdom), Loris Brunetta (Italy)
 
  • Introduction: Is quality of life a priority in treatment today? A patient perspective Amanda Bok (Belgium)
  • Quality of life during and after treatment, Dr Harpreet Kaur, Consultant Hematologist, Sheffield (United Kingdom)
  • Treatment at home for hematological patients: safe, feasible – and improving patient experience? Lars Kjeldsen, Head of the clinic, Rigs Hospital (Denmark)
  • The impact of cancer and its treatment on sex life, Ananda Plate (Germany)
  • From frail to fit: The importance of pre-rehabilitation & rehabilitation on QoL, Natacha Bolaños (Regional Coordinator Europe, Lymphoma Coalition)

Patient Advocacy session 2: Not only survival: Patient-relevant endpoints and patient-reported outcomes

Date: Saturday, June 16, Room K21
Time: 11:30 – 12:45
Chairs: Alfonso Aguarón (Spain), Maria Piggin (United Kingdom)
 
  • Are study endpoints like OS and PFS most relevant to patients and describe highest patient value? Jan Geissler (Germany) 
  • Meaningful Patient-Reported Outcomes - How to learn from real-life experience in clinical research, Guillermo Garcia Manero, MD Anderson Cancer Center (USA) 
  • The end of huge questionnaires? Innovative electronic PRO measurement tools, Dr Harpreet Kaur, Consultant Hematologist, Sheffield (United Kingdom) 
  • Q&A Panel discussion 

  

EHA and EuroBloodNET ePAG Patient Advocacy Capacity Building Meeting (mandatory for all EHA patient advocates!)

Date: Thursday, June 14
Time: 14:00-17:00 (EHA congress), Room A11
 

In collaboration with EHA and the Hematology European Reference Network EuroBloodNet, the EHA PO workgroup is hosting the "EHA Capacity Building Meeting" for all EHA Fellows. This session is mandatory for all patient advocates who received the EHA Fellowship. Agenda: 

  • EuroBloodNet and the ePAG (Ananda Plate) 
  •  Getting the most out of EHA as a patient advocate (Jan Geissler) 
  • Introduction to PRO-Tools and QoL-instruments (Fabio Efficace, GIMEMA) 
  • Reading a scientific poster (Tamas Bereczky) 
  • Patient engagement in scientific publications (Dawn Lobban, Envision)  

Overview: 

Some patient organizations are holding additional training meetings before and after the Capacity Building meeting. 

EHA CBM

EHA Patient Advocate Tapas

Date: Thursday, 14 June 
Time: 21:00 
Location: Copperfields Pub & Restaurang, Sankt Eriksgatan 36, 112 34 Stockholm 

 

Informal networking and gathering of patient advocates with Swedish tapas and drinks. You need to buy your own drinks and food – but no PowerPoint and no presentations – promised! 

 

Other EHA Advocacy Track sessions (not: Patient Advocacy Track)

EU Funded Projects in Hematology: HARMONY Special Session 

Date: Saturday, June 16 
Time: 14:45 – 16:15, Room K2 
 

HARMONY Reception

Date: Saturday, June 16 
Time: 16:20 - 17:00, Room K11 
 

EHA Advocacy Session. Topic:
The real-world value of new-generation treatments 

Date: Saturday, June 16, Room TBD 
Time: 16:00 – 17:15 

 

  • What does the real world look like? The patient perspective Maria Piggin, Trustee, PNH Support UK 
  • The use of Patient Reported Outcome Measures (PROMs) to drive patient interests: the ICHOM perspective Prof. Martin Ingvar, Osher Center for Integrative Medicine, Karolinska Institutet; co-founder and board member of ICHOM 
  • Good decisions need good data: an HTA perspective Dr Stefan Lange, Deputy Director, Institute for Quality and Efficiency in Healthcare (IQWiG) 

EHA & the Scientific Working Group meeting on “Quality of Life & Symptoms Summary presentation”: 

EHA SWG ‘Quality of Life & Symptoms Summary presentation

Date: Saturday, June 16th 
Time: 09:45 to 10:45 
Room: K12 
 
 

 

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