Diapositiva 1

Report
Work Package 7
Information for patients with rare cancers
WP leader: Francesco De Lorenzo
Summary: ECPC:
"Nothing about us without us"
• Representing > 345 cancer patient groups in
42 countries
• All cancers – common and rare
• Run and governed by patients
• Promoting timely access to appropriate
prevention, screening, early diagnosis, treatment and care for all cancer patients
• Reducing disparity and inequity across the EU
• Encouraging the advance of cancer research & innovation
• Increasing cancer patients' influence
over European health and research policy
• High visibility with EU Commission, EMA,
EU Parliament (FACE – 100 European Politicians)
Information network on rare cancers
ECPC Advocacy :
bridging diversity to support cancer
survivors
Coordination &
Advocacy
European level
National level
Information network on rare cancers
Work Package 7


Objective:
– To identify centres of expertise for rare cancers
– To develop and disseminate information for patients
including patients’ associations dedicated to rare
cancers
Deliverables:
– Development of an informative toolkit to inform
patients on rare cancers
– Creation of a list of centres of expertise for rare
cancers to which patients should be referred to
Information network on rare cancers
How?





Using ECPC member organisations - to get feedback and
disseminate the information to rare cancer patients.
Using key patient advocates to give feedback on the information
material developed.
Capacity Building for member organisation to use this information
Identify key tool for patients
Dissemination of this information to different forums including policy
forums
Together
with partners, collaborators, clinicians, patients,
scientific societies, health authorities
Information network on rare cancers
Partners WP7
• Associated partner:
Partners involved: ECPC, INT (epidemiology unit), ISS,
CCC, UE, INT (oncology unit).
•
–
Collaborating partners:
EAARC, EPAAC, ESSO, ESO, INSERM, Centre of
Leon Berard, ESMO, LeukaNet, ECCO
Information network on rare cancers
Milestones

Analyse the patient information status quo before developing the informative
toolkit and discuss with the project

Establish a patient network for rare cancer patients building on the already
existing networks

Develop together with the partners a questionnaire and conduct the survey
meant to identify the clinical centres of expertise

Publish a list of patients associations dedicated to rare cancers (additional
organisations will be added throughout the duration of the project)

Prepare 6 reports on the results of the workshops to train patients and
discuss the results of the survey to identify canters of expertise
Information network on rare cancers
Information network on rare cancers
Patient
Organisations
attended
Masterclass
______________
ECPC will
identify one lead
patient advocate
per Member
State to
coordinate and
liaise with ECPC
Secretariat
1
2
3
4
5
6
7
8
9
10
11
12
13
14
15
16
17
18
19
20
21
22
23
24
25
Organization
Bulgarian Academy of Management of Pain, access to oppioids and palliative
care Esperanza
Diagnoza CML
Lyle Patientforening for Lymfekraeft og Leukaemi
Anvolt (National Association Voluntary Against Cancer)
Italia Glioblastoma Multiforme
Gruppo AIL Pazienti LMC *
OHLB, 'Kraujas'
Lithuania Rare cancer patients advocacy group
Waldenström’s Macroglobulinemia network (EWMnetwork)
Stowarzyszenie Pomocy Chorym na GIST (GIST Patients’ Aid Association)
Nationwide Association of the CML Patients Aid
Polish Cancer Patient Coalition*
Nationwide Association of CML Patients Aid*
Myeloma Euronet Romania
Asociatia Little People Romania
Romanian Association against Leukemia*
Romanian Rare Cancers Association*
Association Ilco-Stoma RS BL*
Gynsam, The Gynaecological Cancer Patients National Coalition*
Paws-Gist
Gist Support UK
Lymphoma Association
brainstrust: the Meg Jones Brain Cancer Charity
International Brain Tumour Alliance (IBTA)
Kidney Cancer Association
*Associations that haven't answered yet to the questionnaire
Country
Bulgaria
Czech Republic
Denmark
Italy
Italy
Italy
Lithuania
Lithuania
Netherland
Poland
Poland
Poland
Poland
Romania
Romania
Romania
Romania
Serbia
Sweden
UK
UK
UK
UK
UK
USA
Information network on rare cancers
Associations to be contacted
Organization
1
Patient Group for lymph and leukemia
cancer patients
Denmark
2
German Leukaemia and Lymphoma Aid /
Deutsche Leukaemie- und Lymphom-Hilfe
Germany
3
5
Leukaemie-Online e.V.
Germany
Contactgroep Myeloom and Waldenström
Patienten (CMWP)/MM&WM Patient
Association
Netherland
Carita Foundation - Life with Multiple
Myeloma
Poland
6
Stowarzyszenie Pomocy Chorym Na Gist
7
Spanish Association of Lymphoma Sufferers Spain
8
Swedish Brain Tumor Association
Sweden
9
CML Support Group UK
Brainstrust: The Meg Jones Brain Cancer
Charity
Uk
4
10
Country
Poland
Uk
Information network on rare cancers
Survey Conducted with Patient Organisations
to identify main activitues
Main Activities of rare cancer organizations
Patient and medical education
Patients support
Fundraising
Create network (between expertises, patients, organizations)
Advocacy
Prevalence and survival estimates for rare cancers
Main Activities
Identification of centers of expertise
Studies and research
Development of clinical guidelines for selected rare cancers
Development of a database to collect information on RC
Information
Finding identification criteria of rare cancer
0
1
2
3
4
5
6
7
8
Information network on rare cancers
Unmet Health Needs of rare
cancer patients
Instable/patchy care system
Access to clinical trials
Access to informations
Weak advocacy
Weak patients network
RC registry
Lack of research or expertises
Unmet health needs of rare
cancer patients
Access to specialized centres
Access to new treatments/drugs/therapies
Lack of precise and timely diagnosis
0
1
2
3
4
5
6
7
8
Information network on rare cancers
Document/Leaflet/information Materials Available
Organization
Country
document/leaflet/inf
ormation materials
available?
Myeloma Euronet Romania
Romania
Paws-Gist
UK
Anvolt (National Association Voluntary
Against Cancer)
Italy
Gist Support UK
Italia Glioblastoma Multiforme
UK
Italy
Yes
Yes
/
Yes
No
Yes
OHLB, 'Kraujas'
Lithuania
Diagnoza CML
Czech Republic
Yes
Yes
Asociatia Little People Romania
Lyle Patientforening for Lymfekraeft
og Leukaemi
Romania
Denmark
No
Yes
Lymphoma Association
UK
Description
Simplified info brochure - romanian
language - paper and electronic format
English, linked to american clinic
Format wished by members
paper
paper and electronic
/
"Eating after gastectomy"; "What is GIST ";
website
/
In the web-site: guide books on treatments,
informational leaflets, educational slideshows, only lithuanian language
Informative material in czech language.
Paper, electronic and dvd format
2 publications: guide for parents; guide for
psychosocial care providers; + An
information website
/
/
paper and online
/
paper and electronic
paper, website, dvd format
electronic
Internet, brochure from medical
professional
11 english booklets and 70 information
sheets covering all aspects of lymphoma. All
our information and materials are available
on our website and can be downloaded.
paper and electronic
Information network on rare cancers
Document/Leaflet/information Materials Available
Yes
Kidney Cancer Association
brainstrust: the Meg Jones Brain
Cancer Charity
USA
Yes
UK
Yes
Stowarzyszenie Pomocy Chorym na
GIST (GIST Patients’ Aid
Association)
Poland
Yes
Waldenström’s Macroglobulinemia
network (EWMnetwork)
Netherland
Yes
International Brain T umour Alliance
(IBT A)
Nationwide Association of the CML
Patients Aid
UK
Yes
Poland
Yes
Lithuania Rare cancer patients
advocacy group
Bulgarian Academy of Management
of Pain, access to opioids and
palliative care Esperanza
Lithuania
/
“We Have Kidney Cancer,” available in 11
languages. in print, for the Kindle, and in
PDF format
Internet
In English – web based support materials
and information with Dept of Health
accreditation, practical tools such as our
brainbox, and other books.
Leaflet: “Diagnoza GIST ? T o nie jest koniec
świata” (Are you diagnozed with GIST ? It is
not the end of the world). I
Instruction how to cooperate with Clinical
GIST Register. Paper format, in Polish.
Basic information for the new diagnosed
GIST patients.
Paper
Web site + EWMnetwork’s flyer is only
available on paper in English language and
describes the aims of the network. T he flyer
is meant as handout on workshops and
congresses.
Electronic
T he IBT A is a founding member of Cancer
52, the alliance of rare cancer organisations
in the UK. As such our members (over 50 of
them) have various types of support material
available both in printed format and
electronic format.
A lot of information we present on the
website of our Association and during the
patients meeting we give them some
materials
have a book about GIST tumors in patients
with Lithuanian language, printed version.
created a documentary film about our
patients, we aim to reducing its social
exclusion
/
/
/
/
/
/
Bulgaria
Information network on rare cancers
Are you in contact with researchers association or
medical professional associations for information?
Organization
Myeloma Euronet Romania
Paws-Gist
Country
Romania
UK
Anvolt (National Association
Voluntary Against Cancer)
Italy
Gist Support UK
UK
Italia Glioblastoma MultiformeItaly
OHLB, 'Kraujas'
Diagnoza CML
Lithuania
Czech Republic
Asociatia Little People Romania
Romania
Lyle Patientforening for
Lymfekraeft og Leukaemi
Lymphoma Association
contact with
researchers/medicals
association
Yes
Yes
Yes
Yes
Yes
Yes, at european level
(EORTC, ESMO, EHA)
Yes
Yes, Universities,
National Society of
paediatric
Oncologists&Haematolo
gists of Romania
Yes
Denmark
UK
Yes. All publications
either written or reviewed
by medical experts.
Medical Advisory Panel
of 30 distinguished
consultant
haematologists and
haemato-oncologists.
Information network on rare cancers
Are you in contact with researchers association or
medical professional associations for information?
Kidney Cancer Association
brainstrust: the Meg Jones
Brain Cancer Charity
Stowarzyszenie Pomocy
Chorym na GIST (GIST
Patients’ Aid Association)
Waldenström’s
Macroglobulinemia network
(EWMnetwork)
USA
Yes
UK
Yes, Clinical GIST
Register
Poland
Netherland
International Brain Tumour
Alliance (IBTA)
UK
Nationwide Association of
the CML Patients Aid
Poland
Lithuania Rare cancer
patients advocacy group
Lithuania
Bulgarian Academy of
Management of Pain,
access to opioids and
palliative care Esperanza
Yes, We sponsor four
international medical
symposia
Yes, Medical Advisory
Board with WM
specialists from different
European countries
Yes
Yes
Not enough
Bulgaria
Yes, Association of
Innovative Medicine
Medical University Sofia
Medical University Varna
Medical University
Pleven
Information network on rare cancers
M1: Analyse the patient information status quo before developing
the informative toolkit and discuss with the project
Actions:
 Questions:
– Use existing information
– Developing new material
– Type of Languages that will be used
– Getting feedback from patient organisations regarding the
format of the information that they would like to receive.
 Contacting our member organisations and asked partners the
type of information that they have
 Getting feedback from the partners in the Project

Information network on rare cancers
M2: Establish a patient network for rare cancer patients
building on the already existing networks
Actions:




Key Rare Cancer Advocates identified at the national level among
ECPC membership
Existing Rare Cancer Action Group that will be expanded and
developed to cover: a) different rare cancers and b) different regions
Asking Rare Cancer Advocates to recruit new patient advocates so as
to have a multiplier effect
Expanding the database of patient advocates that would attend which
would be available to partners.
Information network on rare cancers
M3: Questionnaire and conduct the survey meant to identify
the clinical centres of expertise




Questionnaire will be based on the criteria developed
from WP5
Question will be about Criteria about CoE
Good Response Rate - 80%
In case of low response rate:
– Organize Focus Group Meetings
– Phone Interviews
Information network on rare cancers
M4: Workshops


With Information Toolkit: Provide training workshops and
encourage participants to use the toolkit with their members.
Ensure a high regional participation at these workshops.
– To discuss Criteria of Committee of Expertise - Work
Closely with WP5
– To develop networks between patients and the partners of
the Project.
– To learn and share between patient organisations from
different Member States and provide oppurtunity for partners
in project to engage
– To discuss the transferability of these criteria between
different Member States and within the regions
Information network on rare cancers


M5: Prepare 6 reports on the results of the
workshops to train patients and discuss the results of
the survey to identify centers of expertise
Action:
– To disseminate the outcomes of the surveys and
compile a consensus report on feedback.
Disseminate this to WP leaders for feedback.
– Communication Medium – ECPC website,
FACE website, European Parliament, European
Commission.
– Through Policy Platfforms such as the European
Partnership for action Action Against Cancer.
Information network on rare cancers

Other deliverables of project will be
disseminated by ECPC:
Organizing Meeting with MEPs

Policy Makers at the EU and National
level

Conveying these points at the national
level through our member organisations
so highlighting outcomes
Information network on rare cancers
THANK YOU!
Prof Francesco De Lorenzo
Vice President, ECPC
President, FAVO
Information network on rare cancers

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