- CEO Update
- Guest Blog - Early diagnosis leads to a better prognosis
- Manifesto, Calculator, M-PROM and Public Health
- 2000 delegates at the Rheumatology Conference
- HMSA in the Month of May, Walk a Mile, family programmes
- Arthritis Nation report & RA Unspoken
- Report from Information Day
- RA Awareness Week
- BIMM Courses
- Fibro Survey Results at House of Commons
- JIA and Tea on the Beach
- Reminder of NOS dates
- Vacancy at ARMA
- Request to contact local MP
- London Bridges and Back Pain Seminar
- Important Research from Arthritis Care Scotland
- Psoriasis Scotland and the World Health Assembly
- ARMA Calendar
By the time you read this, most of you will have received a few important new documents which mark a new step in three key areas of work for us this year: a final draft of the ARMA General Election Manifesto, which we hope to make available on our website by end of this week, and the programme and registration details for the MSK World Summit which ARMA is hosting alongside the Bone and Joint Decade in London in October – packed with high-profile names, with more to come. The programme and registration form will be available on the ARMA website later today, so please do visit it later today or tomorrow.
We always said that this event would put MSK firmly “on the map”, and it’s shaping up to do just that.
ARMA members of the MSK clinical networks group will also receive a new document outlining next steps for our MSK clinical networks project in England later this week. It may feel like it’s gone a bit quiet on the clinical networks front, but there’s plenty lined up to happen soon, as this next document will explain.
The issue of “work” is never far from our agenda, and aside from featuring prominently in the World Summit programme, it featured prominently in the month of May for me. On 15th May I gave a presentation at a seminar on “Safer and Healthier Working at Any Age”, as part of a project sponsored by the European Parliament, on both the challenges of working with arthritis and some of the practical steps which employers can take to help people with MSK disorders to remain in or return to work. There were a number of expert speakers from a range of backgrounds, but one thing that struck me was how often MSK disorders came up even before I rounded off with the last presentation of the day, suggesting that a large number of businesses and organisations are taking an increasing interest in workplace health, not least of an MSK nature. ARMA is also a member of the Fit for Work coalition, which met again in May and is preparing a new workplan and General Election Manifesto of its own.
Finally, we are currently recruiting a P/T Project Coordinator to cover Sarah Wright’s (second) maternity leave: please help us find the best candidate by sharing widely – difficult as it will be to fill the gap that Sarah’s going to leave at ARMA for the following nine months!
Guest Blog - Early diagnosis leads to a better prognosis
by Chris Maker, Director of LUPUS UK
One of the biggest problems for people who have lupus is obtaining a diagnosis.
During 2009 LUPUS UK posted a survey questionnaire to all 5,700 members asking them to provide information about how lupus impacts on their lives. The response was overwhelming with over 3,000 completed questionnaires being returned.
The summary of findings was:
- It was taking, on average, more than 7 years to diagnose lupus from the first symptom experienced – this had not improved over a 20 year period.
- More than 45% of patients were initially mis-diagnosed
- The most difficult symptoms to live with are fatigue, joint pain and depression
- Just under 50 % of those who had retired had done so on health grounds
- Of the 42% receiving benefits, 24% receive higher level mobility allowance
When I joined LUPUS UK I quickly learned that most lupus symptoms are invisible, which not only makes diagnosis difficult but can also lead to other problems, in areas such as relationships and work. Accessing benefits can also be difficult and a number of our members have told me that they have been confronted by other members of the public when they have use a parking bay for the disabled, where they are a blue badge holder. The most difficult symptoms to live with – fatigue, joint pain and depression – are, of course, invisible.
To highlight the difficulties that lupus causes we are repeating the survey again this year and have had a terrific response rate of over 2,500. We will look at the results with interest and see how they compare with those of the earlier survey. In particular we’re looking at the time it takes for someone to be diagnosed.
We recognise the importance of GPs as the gateway to treatment by the NHS, the medics whom patients will initially see when symptoms first present. We do not expect GPs to be experts on the disease and we recognise that lupus is, in many cases, difficult to diagnose as it presents in so many different ways with many symptoms similar to those of other conditions. However, we do expect GPs to have an open mind as we know that early diagnosis leads to a better prognosis in most cases.
The results of our survey will assist in our campaign to increase lupus awareness amongst GPs, and we are working with the Primary Care Rheumatology Society and The Royal College of General Practitioners to this end. The message to GPs is ‘think lupus and refer’.
By raising GP awareness, we at LUPUS UK believe that more people will be diagnosed earlier, leading to earlier treatment, which will improve their quality of life with the added benefit of reducing their need to use the health service as much as they have. It is important that awareness of the rarer MSK conditions is raised to ensure that patients do not fall between the cracks.
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Members' News and
Manifesto, Calculator, M-PROM and Public Health
Arthritis Research UK updates for May
Manifesto: We have now finalised the text for our manifesto and it will be published at the end of June. It will separate our policy asks into three parts - prevention, delivering more person centred and integrated care, and the need for a policy environment in which medical research can thrive. It will also encourage MPs and candidates to become active advocates for change in relation to musculoskeletal conditions. For more information please contact Michael firstname.lastname@example.org
Public health and musculoskeletal health: We will shortly by publishing a report on public health and musculoskeletal conditions following our workshop with Public Health England last August. The CMOs for England, Scotland, Wales and Northern Ireland have kindly provided forewords for the report. For more information please contact Benjamin: email@example.com
MSK Calculator: We are working with Imperial College London to develop an online tool providing health planners with accurate and up-to-date musculoskeletal health data estimates of the number of people in England with osteoarthritis, rheumatoid arthritis, disabling back pain and high risk fragility fractures. We are currently analysing the first data set (severe osteoarthritis of the hip and knee) within the charity. We will communicate this to Public Health leads and local authorities shortly.
M-PROM: Arthritis Research UK is working to support the development of a patient reported outcome measure for musculoskeletal conditions (the M-PROM). Patient reported outcome measures (PROMs) are a way of recording how people rate their own health status. In areas where few biomedical measures are available, PROMs are often recognised as an effective way of measuring health outcomes. A draft tool has been developed and Arthritis Research UK will be working with NHS-England to co-fund the piloting of the M-PROM candidate tool in four clinical settings: Orthopaedic surgery, GP referral to physiotherapy, Early Inflammatory Arthritis and a whole health care system. This phase will focus on providing evidence that the tool works and helps people make better decisions.
Care planning: Many thanks for all the input into this report, which we are shortly sending for external review. It is intended for policy-makers and healthcare professionals interested in long-term conditions and supported self-management approaches, including those within NHS England, patient and health professional groups and bodies, research funders and charities. It reviews current policy, clinical guidance, understanding and experience of care planning in relation to people with musculoskeletal conditions, and sets out a series of factors which must be considered to ensure that people with musculoskeletal conditions can benefit from future implementation of care planning. For more information please ask Laura. firstname.lastname@example.org
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London Bridges and Pain Seminar
NASS London Bridges Challenge 18 May
On the hottest day of the year so far, over 80 wonderful NASS supporters took to the River Thames and completed the NASS London Bridges Challenge. We were delighted to see so many people turn up to take part - and although it was swelteringly hot - everyone completed the course. Our youngest participant was 18 months, and our oldest was 80, and together with all the other walkers they helped make a really memorable day.
NASS Back Pain Seminar Programme
NASS are working to reduce the current 8.5 year delay in the diagnosis of AS. As part of this we are running a very successful GP awareness campaign.
Our Back Pain Seminar is aimed at GPs, physiotherapists, osteopaths and chiropractors who see people with back pain. The seminars inform delegates how to distinguish inflammatory back pain (such as AS) from mechanical back pain and other types of back pain. The next seminar is in Reading on 29 May, followed by Lincoln on 19 June and Bath on 27 June.
Read more about our Back Pain Seminar Initiative.
Rheumatology Conference Two Thousand Strong
Thank you to the 2,030 delegates who joined BSR at Rheumatology 2014 in Liverpool!
The British Society for Rheumatology would like to thank all those who made the conference such a huge success, in particular their speakers, chairs, special interest groups, exhibitors and delegates.
You can read more about the cutting-edge research from Rheumatology 2014 by exploring the media coverage, including items in MedPage Today, Rheumatology News and GP Online.
Photos from the conference are available to view and download online (you will need cookies enabled).
HMSA in the Month of May
May was Ehlers-Danlos Awarenes Month
The HMSA has been busy holding fundraising and awareness activities up and down the UK as usual this May. We have held events every weekend of a variety of descriptions.
We would like to thank our fundraisers and more of their activities can been viewed on our Facebook pages.
Staff and volunteers alike are exhausted but feel it is a worthwhile month-long event. One of the most interesting discussions centring around how to raise awareness of complex and multi-systemic conditions such as EDS is where do you draw the line when portraying the conditions? This is something the HMSA is continuing to address within our work and campaigning.
Do a Mile for EDS
The HMSA launched its new annual May fundraising activity called ‘Do a Mile for EDS’.
The concept was designed to encourage us all to take part in a physical exercise of our choice such as skipping, walking, pushing themselves in a manual wheelchair, running etc. Fundraisers could pledge to do as little as a mile, which could be spread out over 31 days if needed.
This has proven to be a very successful and fun project where the participants have enjoyed entering their miles on the website and watching the HMSA logo move up the UK. We currently have less than 74 miles to achieve our target of getting from Land’s End to John O’Groats. You can follow the progress of some of the walkers here.
HMSA’s Family and Self-Management Programmes
During every May weekend the HMSA has run either its full HMSA Family Programme or elements of the Self-Management Programme up and down the UK. We have had over 12 events including in Edinburgh, Bury, Manchester, Birmingham and London. The last weekend of May we are holding a programme again in London and also in Plymouth.
Trip to the Zoo
Thanks to a donation from Galaxy we are ending our busy month of May by taking the children to the Sparkwell Wildlife Centre. One of the things our younger and family members ask us is to provide more social activities which we can incorporate our ethos. So this year a trip to the zoo will include elements of pacing and activity, whilst allowing all the attending members a chance to contribute to the last of this year ‘Do a Mile for EDS’. Thanks to Galaxy for donating £300 for the HMSA to provide this opportunity.
New guidelines for GPs on Joint Hypermobility syndrome or Ehlers-Danlos –hypermobility.
The HMSA is pleased to announce the guidelines for GPs when presented with a hypermobility syndrome such as Joint Hypermobility or Ehlers-Danlos syndrome Hypermobility. The HMSA was involved in discussions around this document 18-24 months ago with Professor Ferrell who was keen to design the advice sheet for GPs in the West of Scotland. This document has been a long time coming but should assist GP’s with diagnosis, treatment and management. Please note this document does not fall within the scope of the HMSA’s Information Standard.
Attending professional conferences is worthwhile.
The HMSA attended the British Society of Rheumatology Conference 29th April- 1st May 2014.
Our stand was very busy and we believe this success reflects the hard work of staff, volunteers and our medical colleagues in raising awareness of these conditions and the impact it has on individuals and their families in all aspects of life.
The HMSA’s CEO also presented in the Special Interest Group on HCTD’s which was an honour to be asked. The presentation was on ‘Plugging the Gap’ and highlighted how the HMSA works with service providers to meet the longer term needs of the service users which are often unable to be addressed due to the restrictions in health and social care provision.
Our attendance at the BSR resulted in the HMSA being asked to assist with training on the perspective of service users and how we can support professionals by many other service providers and medical professionals at the BSR. We look forward to attending the services throughout the UK over the coming months.
The HMSA also launched its new Professional Membership Scheme at the BSR. It was felt that so many professionals were contacting the HMSA for assistance and support for their individual patients that we were in a unique position to offer a bespoke membership. The aim of this will be to bring together a population of hypermobility syndromes service users and the professionals in one place, enabling better communication and opportunities for learning for both parties alike.
Patron of the HMSA, Hannah Ensor, publishes
an excellent ‘Pain Communication’ leaflet.
The HMSA’s Patron, Hannah Ensor, of Stickman Communications Ltd, has been working with Pain UK to publish a highly valuable document for patients and professionals alike. This was also well received at the BSR by the professionals who had an opportunity to preview the A4 double sided leaflet.
The document is now officially launched and is highly recommended and can be obtained from her website www.stickmancommunications.co.uk.
Jeans for Genes Grant
The HMSA is pleased to announce that it has been awarded a grant to run a HMSA Family and Self-Management Masterclass.
The event will be held in Kent on the 6th September 2014 and will be free to delegates attending. We would like to thank Jeans for Genes and Genetic Disorders UK for the award.
If you are interested in attending please email email@example.com.
The HMSA is currently seeking a new Treasurer to assist the charity. The Treasurer will work closely with the CEO and Board of Trustees. This is the first time we have decided to recruit outside of the charity and reflects that the charity is growing rapidly and needs to bring in a new skill set. If you are interested in working with a dynamic charity and have the skills, time and commitment to offer we would be pleased to hear from you. Please email firstname.lastname@example.org for further information.
Arthritis Nation 2014 report & RA Unspoken
Arthritis Care was held on the week commencing 19th May. The launch included publication of “Arthritis Nation 2014 report”, a quantitative survey of peoples’ experience of pain and pain services throughout the UK. Results from this survey show that:
- 70% of people living with arthritis experience constant pain despite taking any relevant medication
- Nearly half of people with arthritis only seek advice from medical professionals when their pain that is nearly, or actually, unbearable.
- Yet 78% of those who received help to manage their pain found it helpful.
Arthritis Care hope to take this work forward by joining with other pain bodies to work on creating national outcome indicators for pain services.
Arthritis Care have teamed up with Roche and Chugai Pharma UK to launch the 'RA Unspoken' website, an exciting campaign aimed at helping people with rheumatoid arthritis (RA) having treatment difficulties. RA Unspoken offers a downloadable diary to help people with RA record their treatment issues and a list of questions that frequently go 'Unspoken'.
Earlier in May, Judi Rhys, AC Chief Executive, spoke to Radio 4’s Woman’s Hour about rheumatoid arthritis & RA Unspoken.
Information Day Report
On Saturday May 17th 2014, LUPUS UK held an information day, featuring a series of speakers talking about a variety of lupus related topics. The presentations were:
- “Living with lupus as a young person” by Dr John Ioannou, Consultant Rheumatologist, University College London Hospital (featuring Lynette Bortey, a young patient)
- “The Pain Toolkit – Self-management techniques” by Peter Moore (Pain Toolkit Trainer)
- “Changing Faces Skin Camouflage Service” (Including demonstration) by John Williams (Head of UK Network, Changing Faces) and Margaret Dunn (Skin Camouflage Practitioner, Changing Faces)
- “Treating Lupus Kidney Disease” by Dr Liz Lightstone, Reader and Hon. Consultant Renal Medicine, Imperial College Hammersmith Hospital
There were approximately 125 people in attendance and the presentations were very well received. The event was recorded for those unable to attend, and the videos will be uploaded to the LUPUS UK website and Youtube channel soon.
Countdown to RA Awareness Week
The countdown is well under way to RA Awareness Week, 16th-22nd June
This is the National Rheumatoid Arthritis Society’s second awareness campaign and the theme for this year is ‘Invisible Disease’. We need your help to raise the profile of RA as much as possible to help us change the public perception of this often misunderstood condition. In the coming days, we will be sharing the activities planned for the week and do make sure you look out for the results of our fatigue survey on the first day of week. To find out more and how you can get involved, please visit www.nras.org.uk/RAWeek
You can help us get RA trending:
By joining our Thunderclap, you can also give us a louder voice and help make RA visible. Sign up with your Twitter and Facebook accounts at http://thndr.it/1vLpXmX
Put your best foot forward for the Ramble:
With RA Awareness Week 2014 almost upon us we are asking you to take part in ‘The RAmble’. We need your help to raise the profile of RA as much as you can to change the public perception of this condition – the ‘Invisible Disease’. We would like you to join us on Saturday 21 June in the beautiful grounds of Spetchley Park Gardens in Worcester (WR5 1RS) to take part in a 1 mile, 5 mile or wheelchair friendly walk (dogs are welcome on the 1 and 5 mile routes if they are well behaved and must be kept on leads at all times).
Registration is from 10am and all three routes will start at 11.00 am. Entry to all three walks is £10, you will receive a goody bag which includes an NRAS t-shirt (children under 13 are free). We do hope you can join us for what promises to be a great day. For more information or an entry form please email email@example.com or call 01628 501547.
BIMM Events: June - Sept
The British Institute of Musculoskeletal Medicine's Upcoming Events 2014
Soft Tissue Examination & Injection Workshop
BMI Hospital, Blackheath, London
The one day BIMM workshop 'Peripheral Injection', offers experiential learning with a high tutor to learner ratio (no more than 1:6) and is suitable for general practitioners, GP registrars and hospital doctors beginning or considering a career or special interest in musculoskeletal medicine. Physiotherapists, nurse and osteopathic practitioners have also found much value in these courses in the past.
This course is based around a series of workstations through which participants rotate, learning surface anatomy, examination skills, indications for injection, needle placement (with practice on models) and safety issues.
14th – 16th June
Systemic Disorders, Cervical Spine
LCOM Boston Place London NW1 6QH
Cervicoscapular pain, radiculopathy, cervicogenic headache and whiplash syndrome are but a few of the cervical spine disorders clarified in this module. Systematic examination with detailed palpatory diagnosis of segmental dysfunction leads to the application of specific manual technique. Ample opportunity is given to the acquisition of these skills through supervised practice on 'normal' subjects. Emphasis is placed throughout this module on the importance of postural training in recovery and prevention of recurrence. The module starts with a full day of teaching and discussion with a rheumatologist on inflammatory and other arthropathies. Common pathologies of the musculoskeletal system, recognition, management, use of imaging and other investigations will be covered in detail. Osteoporosis and its prevention, practical management of arthritis including exercise and joint injections will be covered.
12th – 14th July
Sports and Exercise Medicine, the Lower Limb
LCOM Boston Place London NW1 6QH
The course is a general introduction to sports medicine. With reference to lower limb injury and overuse syndromes the student will learn about the wider range of diagnostic possibilities encountered in the sports medicine clinic and their management. The hip, knee, ankle and foot will be covered comprehensively in terms of anatomy, function, clinical presentations, medical and surgical management.
27th – 29th Sept
LCOM Boston Place London NW1 6QH
This module will cover the essentials of history taking and systematic physical examination of the musculoskeletal system. You will be introduced to the neurophysiology of pain and the relevance of the dysfunction model to understanding the modern epidemic of back pain. You will learn how to assess posture, gait and function and develop your manual skills in diagnosis of soft tissue dysfunction. Through understanding of joint mechanics and physiology you will begin to learn the principles of mobilisation and manipulation. Demonstration of diagnostic technique on clinic patients in later modules together with small group sessions will help you integrate this new knowledge and skills into your own practice.
All information and booking forms available from www.bimm.org or email firstname.lastname@example.org
Results of Fibromyalgia survey
FMA UK gave a presentation in the House of Commons on 12th May, International Fibromyalgia Awareness Day, highlighting the need for data to be collected about the numbers of people diagnosed with FM in the UK and the availability of effective treatment. The presentation included the results of a survey conducted in 2012 by over 500 people with FM.
Read the findings and data in the slide presentation of the survey.
Excerpt from the Press Release:
“The research also highlights how patients’ frustrations are exacerbated by inappropriate and irrational use of medicines not approved by the UK in a search for pain relief. Insufficient research and development of treatments has left many patients without hope of recovery.”
Read the full Press Release.
Tea on the Beach
Bring the family and join us to celebrate the launch of our new service for families living with Juvenile Idiopathic Arthritis (JIA). The event is taking place on Saturday 19th July from 2pm to 6pm in the Coventry area.
There will be opportunities to chat with experts in JIA, have some tea and lots of fun! A free crèche will also be available.
To find out more and to book your place at this free event, call Maria-Benedicta Edwards or Nicky Freemantle on 0845 458 3969 or email email@example.com
The National Osteoporosis Society would like to remind you of the following events:
National Osteoporosis Society Conference 2014
30th June – 2nd December
For more information and to keep up-to-date on the latest developments regarding the conference visit: www.nos.org.uk/conference
All Party Parliamentary Osteoporosis Group (APPOG)
AGM and Drop-in Session
On the 11th June the All Party Parliamentary Osteoporosis Group will hold its AGM and a drop in session on the provision of Fracture Liaison Services across the UK. More information on APPOG can be found at: www.nos.org.uk/appog
World Osteoporosis Day
You can read all about the annual campaign on the worldosteoporosisday.org website.
The National Osteoporosis Society Hastings Area Support Group will be hosting a free study day in east Sussex, St Leonards on Sea.
British Acupuncture Council Conference 2014
Booking has now opened for this year’s British Conference of Acupuncture and Oriental Medicine – we would love to see you there! The conference will take place from 26 – 28 September at the Daventry Court Hotel.
New non-practitioner member of the Governing Board
Following a recruitment process last year, Peter Ward, Chief Executive of the British Dental Association will be joining the BAcC Governing Board from next month as a non-practitioner member.
Request to contact local MP in the run up to the election and raise concerns about CAP/ASA
BAcC is encouraging members to contact their local MP to make the case for Acupuncture and state concerns about CAP/ASA.
Projects Coordinator Wanted - Job Vacancy
Projects Coordinator ARMA – Maternity Cover – 9 month fixed term contract – part time 2 or 2.5 days per week - £26, 259 pro rata.
The Arthritis and Musculoskeletal Alliance (ARMA) is looking for an energetic, highly motivated individual with the ability to manage projects and programmes of activities effectively to drive the Alliance at a time of great opportunity.
ARMA is the umbrella organisation providing a collective voice for the arthritis and musculoskeletal (MSK) community in the UK. Our Alliance consists of 38 member organisations representing all the major patient and professional organisations active in this area, ranging from specialised support groups for rare diseases to major research charities and national professional bodies. Together, we work to improve the lives of the over 10 million people in the UK who are affected by an MSK condition.
The work is likely to be highly varied, and will require excellent organisational skills as well as interpersonal and communication skills. The successful candidate will also have a high level of initiative and enthusiasm and a demonstrable ability to take responsibility for their own workload. They will also have experience of project management and managing budgets, and be able to work well in a small team.
To view the full job description, including the experience and skill set required please click here. Please apply with a copy of your CV and a covering letter to ARMARecruitment@arma.uk.net by 16th June 2014. The anticipated start date is 14th July 2014.
Important Research from Arthritis Care Scotland
Please see the press release "Arthritis Survey Supports Government Agenda on Self Management" that has gone to all Scottish Media this week.
It provides full information on the findings of a survey that Arthritis Care have published this week, as part of Arthritis Care Week (19th to 25th May), which supports the Scottish Government’s decision to prioritise self-management within the health agenda.
New Survey Shows:
- 70% of people with arthritis endure constant pain
- People in Scotland felt that care was improving
- People in Scotland felt that access to self management was improving
Psoriasis Scotland and the World Health Assembly
67th World Health Assembly recognizes psoriasis as a serious non-communicable disease, May 2014.
PSALV asked The Scottish Government and Michael Matheson, Minister for Public Health, to support a resolution on psoriasis and psoriatic arthritis which was considered by the World Health Assembly, May 2014. Both the Minister and the Scottish Government supported the resolution.
We are delighted to report that the resolution was adopted at the 67th World Health Assembly last week by the WHO member states.
Kathleen Gallant, Secretary of IFPA and Chair IFPA Task Force on NCDs, states:
"The adoption of the psoriasis resolution by the 67th World Health Assembly sends a powerful, global message that psoriasis is a serious immune-mediated, painful and disabling NCD that needs greater public awareness of its inflammatory nature, many physical and psychosocial impacts and shared risk factors with other, more deadly NCDs. This is a great opportunity for education and greater understanding, making a tremendous collective first step towards alleviating the devastating effects of this chronic inflammatory disease."
(Stockholm, May, 2014)
FREE Osteoporosis Study, North Yorkshire 04 June 2014
FREE Osteoporosis Study, Brighton 10 June 2014
All Party Parliamentary Osteoporosis Group AGM
and Drop-in Session 11 June 2014
EULAR Congress 2014, Paris 11 June 2014
Policy Leads Meeting, Arthritis Care 17 June 2014
2014 Love Your Bones conference, The Mountbatten Centre 25 June 2014
NRAS Roadshow, York 25 June 2014
Commissioning Show, Excel London 25 June 2014
CEO Meeting, Chartered Society of Physiotherapy 08 July 2014
Sports and Exercise Medicine, the Lower Limb 12 July 2014
ARMA Board Meeting 18 July 2014
Policy Leads Meeting 22 July 2014
Policy Leads & all Stakeholders 09 September 2014
BIMM Foundation Course, London 27 September 2014
CEO Meeting, British Orthopaedic Association 07 October 2014
2014 World Network Conference 12 October 2014
ARMA Board Meeting 17 October 2014
BSR Autumn Conference 27 November 2014
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