1. MDS Patient Forum The Lancaster Hotel London 24 th September 2010

2. Welcome to MDS UK Patient Support Group Patient and Family Forum Welcome to MDS UK Patient Support Group Patient and Family Forum

3. Agenda 10.30 Welcome and Introduction David Hall, Chairman MDS UK Patient Support Group Rodney Taylor, Deputy Chairman, MDS UK 11.00 Introduction to Online Discussion Forum Sophie Wintrich, Patient Liaison, MDS UK 11.15 Patient Forum Discussion – Quality of Life Session Janet Hayden, Haematology Clinical Nurse Specialist King’s College Hospital, London Phyllis Paterson, Haematology Clinical Nurse Specialist Addenbrooke’s Hospital, Cambridge 13.00 – 13.45 Lunch

4. Agenda 13.45 Fundraising brain storming session Everyone welcome to pitch in! Everyone welcome to pitch in! 14.15 Myelodysplasia – Diagnosis and Treatment Dr Chris Dalley, Royal Hallamshire Hospital, Sheffield Dr Chris Dalley, Royal Hallamshire Hospital, Sheffield 15.10 Clinical trials Clinical Nurse Specialists Clinical Nurse Specialists 15.30 General Questions and Answers Session Chris Dalley, Janet Hayden, Phyllis Paterson Chris Dalley, Janet Hayden, Phyllis Paterson 15.50 Tea/Coffee and creation of local groups for London, Kent, Essex – suggestions welcome London, Kent, Essex – suggestions welcome Please also sign-up at the desk for the local groups Please also sign-up at the desk for the local groups

5. MDS UK Patient Support Group Committee – Patient members Sharon Berger - Treasurer Fiona Murray – Secretary David Hall – Chairman Kay Melmoth – Logistics Rodney Taylor – Deputy Chairman Lin Ewart – Newsletter Editor

6. Other Committee members, Consultants, Advisors Sophie Wintrich, MDS Foundation - Central Office and Patient Liaison Phyllis Paterson, Specialist MDS Nurse - Addenbrooke’s Hospital, Cambridge Janet Hayden, Specialist MDS Nurse - King’s College Hospital, London Prof G J Mufti, King’s College Hospital, London Dr Dominic Culligan, Aberdeen Royal Infirmary, Aberdeen Stephen Berger, Trustee - Baker Tilly Nick Wright, Website Design - Baker Tilly Aoife Pauley - Celgene Santoke Naal - Novartis Oncology

7. Activities 2010 NICE NICE  Ongoing consultee role for azacitidine appraisal  Appeal hearing for azacitidine  Re-appraisal 6 th October  Decision expected when….????  Participation at PiN (Patients involved in NICE) meetings Parliament Parliament  Meetings with new MP’s, Westminster  APPG Life Sciences talk by Rodney Taylor  Next APPG Conference 14 th December Anyone welcome to attend Anyone welcome to attend

8. Event 26 th October 2010 Parliament Lobby Event Parliament Lobby Event 26 th October 2010 – 4pm - Westminster 26 th October 2010 – 4pm - Westminster Opportunity to meet your MP face to face Opportunity to meet your MP face to face Raise awareness of MDS Raise awareness of MDS Educate your new MP about MDS Educate your new MP about MDS Raise issue of access to drugs Raise issue of access to drugs Ask questions about Cancer Drug Fund Ask questions about Cancer Drug Fund Opportunity to talk to press Opportunity to talk to press Make your voice heard Make your voice heard See flyer - check our website Sign-up for participation today – at the desk

9. Activities 2010 Attendance at European Patient Support Group Meeting – Zurich Attendance at European Patient Support Group Meeting – Zurich Membership of Cancer 52 Membership of Cancer 52 Membership of Cancer Campaigning Group Membership of Cancer Campaigning Group Patient presentations at Celgene Patient presentations at Celgene

10. Activities 2010 Cooperation on UK wide MDS Quality of Life Study and PRO (Patient Reported Outcomes) Cooperation on UK wide MDS Quality of Life Study and PRO (Patient Reported Outcomes) See flyer in your pack Participation in European Quality of Life Scientific Working Group with EHA (upcoming) Participation in European Quality of Life Scientific Working Group with EHA (upcoming) Working with UK MDS Forum – the UK group of top MDS Specialists and researchers – including Dr Chris Dalley – clinician presenter for this afternoon Working with UK MDS Forum – the UK group of top MDS Specialists and researchers – including Dr Chris Dalley – clinician presenter for this afternoon

11. Planned activities 2010/2011 Newsletter – First Edition Newsletter – First Edition Fundraising - please help with suggestions after lunch Fundraising - please help with suggestions after lunch 3 Marathon runners so far ! 3 Marathon runners so far ! Thank you Elodie, Rachael and David Local patient groups – sign-up this afternoon Local patient groups – sign-up this afternoon Patient Forum Events: Patient Forum Events:  2010 London and Cambridge – and hopefully Bournemouth again this year  Glasgow and Exeter postponed to 2011  Plans for 2011 - Exeter, Oxford, Leeds, Cardiff, London, Cambridge, Bournemouth

12. MDS Foundation News 11 th International MDS Symposium Patient and Family Forum with international guest speakers Edinburgh - May 18-21, 2011 More details to follow soon – please check the websites: www.mdspatientsupport.org.ukwww.mds-foundation.org

13. Online Message and Chat Forum To make contact and chat with others To make contact and chat with others Exchange of experience and support Exchange of experience and support Users located all over the UK Users located all over the UK A further source of information for A further source of information for Sub-types of MDS Sub-types of MDS Regional contacts Regional contacts Particular age-groups Particular age-groups Pre and post transplant issues Pre and post transplant issues

14. Online Message and Chat Forum What you need: What you need: Email address Email address Password you won’t forget Password you won’t forget Step by step demonstration Step by step demonstration MDS Foundation Online Forum also available – well informed and welcoming American patients MDS Foundation Online Forum also available – well informed and welcoming American patients

21. Patient Forum Discussion – Quality of Life Session Janet Hayden Haematology Clinical Nurse Specialist King’s College Hospital, London Phyllis Paterson Haematology Clinical Nurse Specialist Addenbrooke’s Hospital, Cambridge

22. Agenda 13.45 Fundraising brain storming session Everyone welcome to pitch in! Everyone welcome to pitch in! 14.15 Myelodysplasia – Diagnosis and Treatment Dr Chris Dalley, Royal Hallamshire Hospital, Sheffield Dr Chris Dalley, Royal Hallamshire Hospital, Sheffield 15.10 Clinical trials Clinical Nurse Specialists Clinical Nurse Specialists 15.30 General Questions and Answers Session Chris Dalley, Janet Hayden, Phyllis Paterson Chris Dalley, Janet Hayden, Phyllis Paterson 15.50 Tea/Coffee and creation of local groups for London/Kent/Essex London/Kent/Essex Please sign-up at the desk for the local groups. Please sign-up at the desk for the local groups.

23. Fundraising ideas What did you think of the suggestions? What did you think of the suggestions? Who has another idea? Who has another idea? Who has a little bit of time? Who has a little bit of time? Who has willing friends or family members to help? Who has willing friends or family members to help? Who has access to good venues or halls? Who has access to good venues or halls? Who has interesting contacts? Who has interesting contacts? Who knows people with goods to donate? Who knows people with goods to donate?

24. Last Part – Local Groups ! Local Support and Chat groups for: Local Support and Chat groups for: London London Kent Kent Essex – lead by Chris Dugmore Essex – lead by Chris Dugmore Anywhere else? Anywhere else? Volunteers? Volunteers? Venues? Own home? Coffee place? Venues? Own home? Coffee place? Sign-up at welcome desk Sign-up at welcome desk

25. Thank you for attending – and participating! Next 2010 Forum are: 12 th November – Cambridge Please hand in questionnaires, evaluation forms and badges before you leave. Thank you !