INFODAY PROGRAMME. London Friday 18 November

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1 INFODAY London Friday 18 November 2016 PROGRAMME

2 Dear Attendee A warm welcome from everyone at Myeloma UK to our Patient and Family AL amyloidosis Infoday. Patient and Family AL amyloidosis Infodays are about people affected by AL amyloidosis learning from experts in the field and meeting others in a similar situation. A typical AL amyloidosis Infoday includes various slide presentations, Q&A sessions, group breakouts, networking and discussion time. Please take some time to visit the Myeloma UK Information Table where you will find copies of all our publications. You can also order these, along with copies of the presenters slides by completing the enclosed order form and handing it to a Myeloma UK staff member. Information from this Infoday, and copies of the slides, will also be posted on our website following the event. We hope you find the day interesting and informative. Your feedback is vital for planning future events please complete the enclosed evaluation form at the end of the day. Our team is here to help throughout the day if you need anything, please ask. Kind regards Sue Perkins Service Development Manager Today s Myeloma UK staff team at the AL amyloidosis Infoday includes: Hollie Nichol - Services Events Coordinator Ruth Harris - Community Fundraiser Eric Low - Chief Executive Suzanne Renwick - HCP Projects Manager Sue Perkins - Service Development Manager Louise Farmer - PR and Media Manager Lindsay Perera - Head of Major Gifts Please ask a member of Myeloma UK staff if you require assistance 02 AL amyloidosis Infoday Park Crescent Conference Centre, London, Friday 18 November 2016

3 Programme Chair 8.30am 9.00am 10.00am 10.10am 10.30am 11.15am 11.45am 12.30pm 1.30pm 2.15pm 3.15pm 3.30pm 3.50pm 4.00pm Prof Philip Hawkins, Professor of Medicine and Clinical Director, National Amyloidosis Centre Registration and refreshments AL amyloidosis: an introduction for newly diagnosed patients (optional) Dr Julian Gillmore, Reader in Medicine and Honorary Consultant Nephrologist, National Amyloidosis Centre, University College, London Medical School, Royal Free Hospital Welcome from the Chair Prof Philip Hawkins About Myeloma UK Eric Low, Myeloma UK Treatment strategies for AL amyloidosis Dr Ashutosh Wechalekar, Senior Lecturer and Honorary Consultant Haematologist, National Amyloidosis Centre, University College, London Medical School, Royal Free Hospital Refreshments and networking Management of complications and side-effects of treatment Dr Helen Lachmann, Reader in Medicine and Honorary Consultant Nephrologist, National Amyloidosis Centre, University College, London Medical School, Royal Free Hospital Lunch New insights and future directions Prof Philip Hawkins Breakout sessions: Group A: Ask the expert: Q&A discussion Prof Hawkins, Dr Gillmore and Dr Wechalekar Group B: Cardiac amyloidosis Dr Marianna Fontana, Senior Lecturer/Honorary Consultant Cardiologist, National Amyloidosis Centre, University College London Medical School, Royal Free Hospital Group C: Carer and family perspectives Suzanne Renwick, Myeloma UK Refreshments and networking Patient experience Mr Richard Preston Final comments Prof Philip Hawkins and Eric Low Close 03

4 Programme Afternoon breakout sessions ( pm) After lunch there will be two simultaneous breakout discussion sessions. Attendees should select from one of the following: Group A: Treatment of AL amyloidosis Q&A discussion - Main Theatre This session is open to all attendees and will offer the opportunity to ask further questions on any aspect of AL amyloidosis including treatment, side-effects and complications. The expert panel will include Prof Philip Hawkins, Dr Julian Gillmore and Dr Ashutosh Wechalekar. Group B: Cardiac amyloidosis Portland Room This session will be facilitated by Dr Marianna Fontana, Lecturer/Honorary Consultant Cardiologist, National Amyloidosis Centre, University College London Medical School, Royal Free Hospital and will offer the opportunity to learn more about cardiac amyloidosis. Group C: Carer and family perspectives Club Room This session will be facilitated by Suzanne Renwick, HCP Projects Manager, Myeloma UK and will offer the opportunity for carers and family members to share experiences and to support each other. We request that patients do not attend this session. Please ask a member of Myeloma UK staff if you require assistance 04 AL amyloidosis Infoday Park Crescent Conference Centre, London, Friday 18 November 2016

5 Speaker profiles Name: Prof Philip Hawkins (Chair) Title: Professor of Medicine and Clinical Director Place of work: National Amyloidosis Centre, University College London Medical School, Royal Free Hospital Prof Philip Hawkins qualified at St George s Hospital Medical School, London in He trained in internal medicine and rheumatology at St George s and then Hammersmith Hospital where as an MRC Training Fellow he undertook a PhD in the field of amyloidosis. He was appointed Senior Lecturer and subsequently Reader in Medicine at the Royal Postgraduate Medical School, Hammersmith Hospital where he further developed his clinical and research interest in the pathogenesis, diagnosis and treatment of amyloidosis, and lately hereditary periodic fever syndromes. He moved to University College London at the Royal Free Hospital in 1999 as Professor of Medicine and Clinical Director of the newly created National Amyloidosis Centre. He was elected to Fellowship of the Academy of Medical Sciences in Name: Dr Julian Gillmore Title: Reader in Medicine and Honorary Consultant Nephrologist Place of work: National Amyloidosis Centre, University College London Medical School, Royal Free Hospital Dr Julian Gillmore gained his medical degree in 1991 from Guy s Hospital, University of London. He trained in nephrology and undertook an MD degree at the Royal Postgraduate Medical School, Hammersmith Hospital in the field of amyloidosis. He subsequently undertook a period of laboratory research at UCL and completed a PhD in He was appointed Senior Lecturer at the National Amyloidosis Centre, UCL in His research interests include pathogenesis, diagnosis and treatment of amyloidosis. 05

6 Speaker profiles Name: Dr Ashutosh Wechalekar Title: Senior Lecturer and Honorary Consultant Haematologist Place of work: National Amyloidosis Centre, University College London Medical School, Royal Free Hospital Dr Ashutosh Wechalekar is a Senior Lecturer at University College London Medical School and Honorary Consultant Haematologist at the Royal Free Hospital. He trained in medicine at Medical College Nagpur, India and did his haematology training in Southampton. In 2001, he did a clinical research fellowship in myeloma and related disorders at Princess Margaret Hospital in Toronto, Canada. In 2004, he joined the National Amyloidosis Centre as a senior research fellow. In 2007 he was appointed to his current post. His scientific interests are focused on characterisation and treatment of systemic amyloidosis and myeloma with a focus on the biology of plasma cells and the study of new and novel drugs in these disorders. Name: Dr Helen Lachmann Title: Reader in Medicine and Honorary Consultant Nephrologist Place of work: National Amyloidosis Centre, University College London Medical School, Royal Free Hospital Dr Helen Lachmann is a Senior Lecturer at University College London Medical School and Honorary Consultant Nephrologist at the Royal Free Hospital. She trained in medicine at the University of Cambridge and at University College London. In 1999, following postgraduate training in internal medicine and nephrology, she started her research at the National Amyloidosis Centre and in 2005 she was appointed to her current post. Her main scientific interests are focused on the phenotypic characterisation and treatment of acquired and hereditary forms of systemic amyloidosis and the genetics and management of the inherited periodic fever syndromes. 06 AL amyloidosis Infoday Park Crescent Conference Centre, London, Friday 18 November 2016

7 Name: Dr Marianna Fontana Title: Senior Lecturer/Honorary Consultant Cardiologist Place of work: National Amyloidosis Centre, University College London Medical School, Royal Free Hospital Marianna Fontana gained her medical degree in 2006 from the University of Pisa. She trained in cardiology to CCT level and subsequently moved to the UK and undertook a PhD degree at the National Amyloidosis Centre and Heart Hospital Imaging Centre, UCL University. She was appointed Senior Lecturer at the UK National Amyloidosis Centre, in Her research interests include pathogenesis, diagnosis and treatment of cardiac amyloidosis with a special focus of cardiac magnetic resonance. Name: Eric Low Title: Chief Executive Place of work: Myeloma UK Eric has been involved in the field of myeloma for over 20 years. Working as a volunteer in the United States for the International Myeloma Foundation he recognised the need and the benefit of providing information and support to people affected by myeloma. Returning to the UK, Eric identified the need for a similar organisation in the UK and as a result he set up Myeloma UK in Under Eric s direction Myeloma UK has grown and developed into one of the most respected cancer organisations in the UK with an impressive record of delivery and success. Amongst a very busy portfolio of projects Eric s principal focus at the moment is the Myeloma UK Clinical Trial Network (CTN) and myeloma genetics and drug development research programme. Eric also spends much of his time out and about meeting with representatives from the myeloma community, relentlessly advocating and campaigning on behalf of myeloma patients. Through his passion and enthusiasm he has significantly raised the profile of myeloma in the medical, political and media arena. Eric was awarded an OBE for services to charity as Chief Executive, Myeloma UK in the Queen s Birthday Honours

8 Amyloidosis Support Groups The National Amyloidosis Centre patient support forum ( is an online community enabling patients, family members and carers from all over the UK to meet and give each other support, advice and encouragement. Some patients and family members are interested in meeting up in real life as well. There are now several support groups holding informal meetings for patients, families and carers. Visit and click on the local support group thread to find out more or contact the following organisers: Scotland Contact: George Turner E: Manchester Contact: Lesley Toft E: London Meets: Every few months (check with Leader) Contact: David Goldstone E: Colchester, Essex Contact: Sandra Blundell E: If you d like to set up a group elsewhere: Contact: Miriam Pepys E: miriam.pepys@ucl.ac.uk Other online website and forum: There are also a number of local haematology/myeloma Support Groups across the UK which welcome AL amyloidosis patients. Please see for more details or call the Myeloma Infoline free on AL amyloidosis Infoday Park Crescent Conference Centre, London, Friday 18 November 2016

9 Your Notes 09

10 Your Notes 10 AL amyloidosis Infoday Park Crescent Conference Centre, London, Friday 18 November 2016

11 Your Notes 11

12 We hope you enjoyed the AL amyloidosis Infoday. For further information about AL amyloidosis and Myeloma UK visit or call the Myeloma UK Infoline on Myeloma UK 22 Logie Mill, Beaverbank Business Park, Edinburgh EH7 4HG Myeloma UK Infoline: Charity No: SC

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