Patient Advocacy at European meetings "18th EHA Congress" and "ECC 2013"

In case CML patient advocates consider to attend the international meetings of the European Hematology Association (EHA, 13-16 June 2013) and European Cancer Congress (28 Sept - 1 Oct 2013), we would like to update you on opportunities to attend these meetings and contribute to the programme. Please note the tight deadlines mentioned below if you want to attend or contribute!

Patient Advocacy Session in the EHA Programme, 15 June 2013

The European Hematology Association's Congress is the leading event for clinicians and researchers in hematology to present the newest data from European clinical trials. About 9000 delegates are expected to attend this year's congress held from 13-16 June 2013 in Stockholm.

We are so glad that over the years, the patient community has established strong links to the European Hematology Association, and the CML Advocates Network has played a major role in this collaboration. EHA and the EHA Patient Working Group has jointly established the "Patient Advocacy Session" in EHA's Scientific programme, to bring key topics of the patient community to the attention of hematologists. In previous years this session, covering Access to Clinical Trials (2010), Adherence (2011) and Quality of Life (2012), has been very successful and has gained a lot of interest by health professionals. See page 4 and 10 in last year's EHA Newsletter:

A small team of patient advocates has worked hard to make the EHA Patient Advocacy Session an interesting one again this year. The good news is the patient advocacy session has grown from originally 45 minutes in previous years to now 2:15h, allowing us to cover topics more in depth!  In addition, it is now embedded in a full-day "advocacy track" within the EHA programme. This year we have selected "Involving patients as partners in clinical research" as the lead topic for the Patient Advocacy session.

At the end of this email you find below find some of the advocacy-related sessions in the EHA programme, including also Giora's presentation of the Adherence survey in the oral CML session and the preliminary programme of the Patient Advocacy Session. If you plan to attend EHA, let us know!

50 free registrations for patient advocates the EHA Congress

Over years we have addressed to EHA that it is very difficult for patient advocates to attend scientific meetings because of the conference fees. This year, EHA has kindly agreed to provide patient advocates with 50 free registrations for the EHA congress. In order to get these free tickets, you need to provide me with the name, organisation name and email address of those advocates that want to get free registration. It is of key importance that people attending EHA are coming as representatives of patient organisations, and not in their own personal interest, that they speak English fluently, and that we can prove after the meeting that those that attended report back to the community e.g. by writing reports, blogs or "lessons learned". Free registrations should not be given to third parties, and EHA trusts us that we only give patient advocates access to the meeting.

If you want to register advocates from your patient organisations for EHA, please provide me with the following details by 28 May 2013:

  • Name of patient organisation
  • First name
  • Family name
  • Country of residence
  • Personal Email of participant
  • Contact/email in the organisation

The CML Advocates Network will also have a booth at EHA, together with 10 other hematological patient organisations. In addition, there will be a strategy meeting of leaders of European hematological patient organisations where we will discuss closer collaboration amongst European umbrella organisations across hematological diseases.

Patient Advocates at European Cancer Congress 2013 in Amsterdam!

With over 18.000 delegates expected to attend, the European Cancer Congress is one of the most important cancer meetings Europe. It is held from 27 September to 1 October 2013 in Amsterdam, with a full patient advocacy track held on 28-29 September. Over the past year, the ECCO Patient Advisory Committee, comprised of patient leaders from all across Europe including Jan, has worked hard on a very interesting two-day track targeting both oncologists and patient advocates. In addition, an exhibition called "Patient Advocacy Square" has been established to enable patient advocacy organisations to outline and promote their initiatives to the multidisciplinary professional oncology audience in Europe. Patient advocates are also invited to present their successful projects to the congress participants, and scholarships for traveling to the congress are also still available.

Share your most exciting patient advocacy projects at the European Cancer Congress 2013 in Amsterdam!

Cancer patient group representatives from across Europe are invited to submit an abstract for the ‘Advocacy: Sharing best practice’ session at the "European Cancer Congress 2013", organized by ECCO, ESMO and ESTRO. Eight patient advocacy projects will be selected for presentation in a session which will be held on Sunday, 29 September 2013. This is a key opportunity for CML advocates to demonstrate the power of their advocacy initiatives to oncologists, fellow patient advocates and other stakeholders attending the congress!
This session will provide advocates with the opportunity to showcase a successful advocacy or patient support initiative which can be replicated in other countries/disease settings. The submitted projects must be completed or well in progress with concrete results at the time of the application. Projects must relate to one of the three topic categories:

  • Advocacy in action
  • Patient support services
  • Awareness and communication

The session will take place on Sunday, 29 September, 9:00 to 11:00. Eight projects will be selected for oral presentation. Each presentation will be of maximum 10 minutes and will be followed by a 5-minute discussion. Travel costs will be reimbursed for selected speakers according to ECCO's reimbursement policy.

Deadline for submission of abstracts is 15 June 2013. Abstracts submitted for presentation at the ECC 2013 Patient Advocacy & Ethics track will be reviewed by the track's committee members and will be judged on the quality of the information supplied in the application only.

Detailed information about the Call for Abstracts, as well as the application form can be found here:

European Cancer Congress Programme - and programme of the "Patient Advocacy & Ethics Track"
The programme of the Patient Advocacy & Ethics Track within the European Cancer Congress 2013 can be found here (click "Track" drop-down list and select only "Patient Advocacy/Ethics" and then SEARCH)

Travel grants to the Congress
There are also additional opportunities available for patient advocates at ECC 2013, including free exhibition space for patient advocacy organisations and attendance scholarships to cover travel costs.  Note that the deadline for applying for a free exhibition slot in Patient Advocacy Square is 30 May 2013.

Please let us know if you have any questions.


Best wishes

Giora and Jan


Relevant advocacy sessions at 18th EHA Congress (2013)


EHA Patient Advocacy Session: Involving patients as partners in clinical research

08:00 – 10:15 on Saturday June 15, 2013, Stockholm
Section 1: Involving patients as partners in clinical research

  • Patients as leaders and partners in beating rarer cancers (Simon Denegri, INVOLVE)
  • Educating Patients as qualified partners in hematology research (Jan Geissler, EUPATI) 
  • Personalized medicine: more personal or more alone? (Judy Dewinter, Myeloma Patient, UK)

Section 2: Informed consent, trial results, ethics in biobanking: Turning challenges into opportunities

  • Not just paper: Turning improved informed consent into an opportunity in clinical trials (Deborah Mascalzoni, EURAC Research Bolzano, Italy)
  • How communicating trial results to patients can improve recruitment and retention (tbc) 
  • Overcoming ethical issues in biobanking: Patient consent and commercial use of tissue (Doris Schmitt, Foundation PATH)

EHA/ESH Joint Symposium: What do you mean, I can't have the treatment?
An interactive session for hematologists and patients

11:45 - 12:45 on Saturday June 15, 2013, Stockholm

Chair: Steve Johnson
Steve Johnson, Taunton UK
Ben Kennedy, Leicester UK
Graham Jackson, Newcastle UK
Tricia Gardom, UKCLL Support Association

EHA/ASH Joint Symposium
Delivering Health Care in Times of Economic Crises

13:15 - 14:15 on Saturday June 15, 2013, Stockholm
Chairs: Ulrich Jäger, Janis Abkowitz
Speaker:  Peter Clark, Technical Appraisal Committee of NICE (National Institute for Health and Care Excellence)
Laurent Degos, University ParisVII -Denis Diderot, Paris, France,
Nikos Dedes, Positive Voice, Athens, Greece

EHA Advocacy Session
EHA, EU Policy & Personalized Medicine

16:15-17:30 on Saturday June 15, 2013, Stockholm
Chair: Ulrich Jäger
Ulrich Jäger, European Hematology Association
Ton Hagenbeek, European Hematology Association
Denis Horgan, European Alliance for Personalised Medicine (EAPM)
Jan Geissler, European Patients' Academy on Therapeutic Innovation (EUPATI)

Non-adherence In Chronic Myeloid Leukemia:
Results Of A Global Survey Of 2546 CML Patients In 79 Countries

Presented by Giora Sharf, CML Advocates Network / EHA Patient Workgroup member
Oral Presentation, EHA Session 08. Chronic myeloid leukemia - Clinical
16 June 2013, 8:45-9:00, Victoria Hall