1. Work Package 7 Information for patients with rare cancers WP leader: Francesco De Lorenzo

2. Information network on rare cancers 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)

3. Information network on rare cancers ECPC Advocacy : bridging diversity to support cancer survivors European level National level Coordination & Advocacy

4. 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

5. 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

6. 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

7. 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

8. Information network on rare cancers

9. OrganizationCountry 1 Bulgarian Academy of Management of Pain, access to oppioids and palliative care EsperanzaBulgaria 2Diagnoza CMLCzech Republic 3Lyle Patientforening for Lymfekraeft og LeukaemiDenmark 4Anvolt (National Association Voluntary Against Cancer)Italy 5Italia Glioblastoma MultiformeItaly 6Gruppo AIL Pazienti LMC *Italy 7OHLB, 'Kraujas'Lithuania 8Lithuania Rare cancer patients advocacy groupLithuania 9Waldenström’s Macroglobulinemia network (EWMnetwork)Netherland 10Stowarzyszenie Pomocy Chorym na GIST (GIST Patients’ Aid Association)Poland 11Nationwide Association of the CML Patients AidPoland 12Polish Cancer Patient Coalition*Poland 13Nationwide Association of CML Patients Aid*Poland 14Myeloma Euronet RomaniaRomania 15Asociatia Little People RomaniaRomania 16Romanian Association against Leukemia*Romania 17Romanian Rare Cancers Association*Romania 18Association Ilco-Stoma RS BL*Serbia 19Gynsam, The Gynaecological Cancer Patients National Coalition*Sweden 20Paws-GistUK 21Gist Support UKUK 22Lymphoma AssociationUK 23brainstrust: the Meg Jones Brain Cancer CharityUK 24International Brain Tumour Alliance (IBTA)UK 25Kidney Cancer AssociationUSA *Associations that haven't answered yet to the questionnaire Patient Organisations attended Masterclass ______________ ECPC will identify one lead patient advocate per Member State to coordinate and liaise with ECPC Secretariat

10. Information network on rare cancers Associations to be contacted OrganizationCountry 1 Patient Group for lymph and leukemia cancer patients Denmark 2 German Leukaemia and Lymphoma Aid / Deutsche Leukaemie- und Lymphom-HilfeGermany 3Leukaemie-Online e.V.Germany 4 Contactgroep Myeloom and Waldenström Patienten (CMWP)/MM&WM Patient AssociationNetherland 5 Carita Foundation - Life with Multiple MyelomaPoland 6Stowarzyszenie Pomocy Chorym Na GistPoland 7Spanish Association of Lymphoma SufferersSpain 8Swedish Brain Tumor AssociationSweden 9CML Support Group UKUk 10 Brainstrust: The Meg Jones Brain Cancer CharityUk

11. Information network on rare cancers Survey Conducted with Patient Organisations to identify main activitues

12. Information network on rare cancers Unmet Health Needs of rare cancer patients

13. Information network on rare cancers Document/Leaflet/information Materials Available

14. Information network on rare cancers Document/Leaflet/information Materials Available

15. Information network on rare cancers Are you in contact with researchers association or medical professional associations for information?

16. Information network on rare cancers Are you in contact with researchers association or medical professional associations for information?

17. 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

18. 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.

19. 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

20. 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

21. 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.

22. 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

23. Information network on rare cancers THANK YOU! Prof Francesco De Lorenzo Vice President, ECPC President, FAVO