Organization:National Osteoporosis Society

File:National Osteoporosis Society logo.png
Founded	1986
Type	Charity
Focus	Osteoporosis
Headquarters	Camerton, Somerset, England
Area served	United Kingdom
Key people	Camilla, Duchess of Cornwall
Website	www.nos.org.uk

The National Osteoporosis Society (NOS), established in 1986, is the only UK-wide charity dedicated to improving the prevention, diagnosis and treatment of osteoporosis. It is based in Camerton, Somerset, England .

Organisation

Osteoporosis is a fragile bone condition. It can lead to painful and debilitating broken bones, particularly of the wrist, hip and spine. Broken bones are also known as fractures. Often these occur from just a minor bump or fall and many such breaks could have been prevented with earlier diagnosis and treatment.

Is it estimated that over three million people in Britain are affected by osteoporosis, causing around 500,000 broken bones every year.

The society, which celebrated its 30th anniversary in June 2016, works on behalf of all those affected by the condition, to raise awareness and understanding of osteoporosis among the general public and health professionals. Its aim is to prevent future fractures and help and support people living with the condition today.

Her Royal Highness The Duchess of Cornwall is President of the charity. Ambassadors include Dr Miriam Stoppard OBE, Miriam Margolyes OBE, Craig Revel Horwood, Susan Hampshire CBE, and Diana Moran.

In 2016 the charity’s income totalled more than £4.8 million.

On September 23 2018 the National Osteoporosis Society announced that it has had a rare Royal title approved by The Queen. Subsequently, the charity has announced its intention to be known as the Royal Osteoporosis Society in 2019.

History

Following its foundation in Somerset in 1986, by Professor Allan Dixon and Linda Edwards, the charity set about the task of raising awareness and fighting for those affected by the osteoporosis.

In 1987 membership of the new organisation grew with 2,000 members joining in one year. The charity held its first scientific conference on osteoporosis and bone health in 1988, an annual event which continues today, attracting hundreds of health professionals. The conference is now recognised across the world as an important date in the bone health calendar.

Membership reached 13,500 in 1991 as increasing numbers of people affected by osteoporosis join the charity for help and support. In 1992 the charity launched its telephone Helpline with just two specialist osteoporosis nurses.

1993 saw the charity develop its first education pack for schools with the focus on helping people to build stronger bones. The following year, 50,000 leaflets about osteoporosis and bone health were sent to fracture clinics in hospitals across the UK.

In 1996, the charity launched its first Research Appeal to fund ground-breaking research into osteoporosis and in 1997, the charity went online with its first website.

1998 saw the first government strategy on osteoporosis launched following years of campaigning. The charity also worked with students from the London College of Fashion to host a fashion show highlighting the problems of finding great looking clothes to fit people with osteoporosis.

The following year, Dr Miriam Stoppard OBE became an ambassador of the charity helping to raise awareness of the condition and actor Ross Kemp lent his support in launching the charity’s Bone Friendly Logo, raising awareness of products beneficial to bone health.

In 2000, the charity’s national TV ad campaign titled ‘It could happen to you’ was seen by millions of people.

2001 celebrated Her Royal Highness The Duchess of Cornwall become President of the charity. Having been an ambassador since 1987, HRH continues to work tirelessly on behalf of the charity and all those affected by osteoporosis.

In 2003, the charity’s network of local Support Groups reached 130. The groups, run by dedicated volunteers, work to build awareness and offer support in their local communities.

The charity’s 10th annual conference in 2004 attracted almost 900 scientists and clinicians.

As a result of a 2004 inquiry report by an All Party Group of MPs and politicians with an interest in osteoporosis, the Government announced £20 million extra funding for DXA bone density scanners in England in 2005.

2006 saw the charity launch a programme to provide mobile DXA scanning trucks, thanks to a donation from The Grand Lodge of Mark Master Masons. This developed into the Osteoporosis Scanning Services Development Project (OSSDP), providing funding for 14 separate projects in England and Wales.

In 2007, the charity launched a further Research Appeal to fund research into osteoporosis. In the same year 24,000 people signed the charity’s petition to call on the Prime Minister to review government guidance that recommended one type of treatment which a quarter of people were unable to take. The petition was delivered to Downing Street, generating wide scale publicity and media coverage.

Craig Revel Horwood and Dr Miriam Stoppard OBE fronted the charity’s ‘Boogie for Your Bones’ awareness campaign about building strong bones through dance, in 2008.

Separate manifestos for England, Wales, Scotland and Northern Ireland were launched in 2009, setting out steps to improve the prevention, diagnosis, treatment and care of osteoporosis.

In 2010, 375,000 free information leaflets were sent out in response to enquiries from members and health professionals.

The charity celebrated its 30th anniversary in 2016. Ambassador Susan Hampshire CBE was presented with the Duchess of Cornwall Award in recognition of her work to raise awareness and funds for those affected by osteoporosis.

The ‘Sunlight’ campaign launched in 2013 advising people about the bone-building benefits of safe exposure to the sun. Over 5,000 healthcare professionals downloaded the influential Vitamin D and Bone Health clinical guidance/guidelines.

In 2014 the charity’s drive to create more Fracture Liaison Services (FLS) across the UK, in partnership with local NHS A&E and orthopaedic departments, is set up to identify patients who have had a fracture and might be at risk of osteoporosis, then appropriately treating and referring patients.

42% of people the charity surveyed reported being in long-term pain that they didn’t think would ever go away. Fear of fracturing again leads to a reduction in normal activities, social isolation and depression. Spinal fractures in particular can devastate people’s lives leading to severe spinal deformity, chronic pain and height loss.

Fracture Liaison Services (FLS) systematically identify, treat, monitor and refer to appropriate services all patients aged over 50 years within a local population who have suffered a fragility fracture, with the aim of reducing their risk of subsequent fractures.

The charity is working to establish UK-wide coverage of FLS, and aims to ensure that every person aged over 50 who breaks a bone is assessed for osteoporosis and managed appropriately through an FLS. Studies show that half of hip fractures occur in patients with a prior fragility fracture. It is estimated that 25% of hip fractures could be prevented with systematic identification and treatment of fragility fractures - ultimately saving lives.

“NOS has been leading in the development and implementation of FLS in the UK over the last two years to ensure that secondary fracture prevention becomes mainstream in the NHS. Their achievement of establishing 18 new services has been phenomenal. However, there is still wide variation in provision across the country and further services need to be created to ensure prevention of further fragility fractures.”

Professor Neil Gittoes BSc PhD FRCP, Consultant Endocrinologist, National Osteoporosis Society Trustee and Chair of the Clinical and Scientific Committee.

To enable them to continue to drive forward engagement with FLS, the charity have set a fundraising target of £4m over the next 5 years, which will help to ensure all patients receive the same care and treatment across the UK through increased provision of FLS.

#LaceUpForBones, a campaign to raise awareness about the importance of exercising to keep healthy bones strong, launched in 2015.

In 2016, charity President Her Royal Highness The Duchess of Cornwall wrote to British astronaut Tim Peake, thanking him for his help in osteoporosis research during his time in space. The work undertaken was designed to help researchers develop interventions to prevent bone loss and to help future space travellers as well as people living with osteoporosis on Earth.

2017 saw the launch of the charity’s most recent awareness campaign, A Message to My Younger Self. Designed to start the conversation about bone health between the generations, the campaign focusses on the two key themes of Nutrition and Exercise. People were also invited to share a message to their younger selves, about the importance of building strong and healthy bones during childhood and adolescence. Launched in April, the campaign prompted wide scale interest and debate in the national press.

On September 23 2018 the National Osteoporosis Society announced that it has had a rare Royal title approved by The Queen. Subsequently, the charity has announced its intention to be known as the Royal Osteoporosis Society in 2019.

2019 marks two significant moments – it is the 25th anniversary since the National Osteoporosis Society, the European Foundation for Osteoporosis (now IOF) and the World Health Organisation announced the landmark decision on how to clinically define osteoporosis across the world. It also marks 25 years since National Osteoporosis Society president, Her Royal Highness The Duchess of Cornwall, started her longstanding association with the National Osteoporosis Society.

Research and awards

The National Osteoporosis Society supports ground-breaking and pioneering research aimed at improving the prevention, diagnosis treatment of osteoporosis.

The charity has invested over £5 million in more than 130 projects which have enhanced knowledge and understanding of osteoporosis, leading to significant improvements in diagnosis and treatment.

Results from research funded by the charity which looked at the positive effects of hopping on the bone health of older men, were widely reported in the national media.

Updates on the research funded by the charity were published in some of the UK’s leading scientific journals during 2015, ensuring visibility of the charity’s work in the bone health community.

The charity does not receive any government funding. All research projects are enabled through the support of members and donors.

Latest Research Strategy

The charity launched its new Research Strategy in October 2017. The Research Strategy aspires to progress the Charity's four key aims to Care, Support, Prevent and Cure osteoporosis, and reinforces the charity's commitment to drive their research agenda through:

• Funding high-quality research
• Influencing and partnering with key bone health funders
• Supporting the next generation of osteoporosis research leaders
• Engaging the public with osteoporosis research

The Duchess of Cornwall Award

The Duchess of Cornwall Award was created by the charity in 2009. It recognises an individual for their outstanding contribution to the field of osteoporosis, in any of the following areas:

• Clinical achievement and advancements
• Research
• Management and Leadership (progressed the National Osteoporosis Society and the osteoporosis agenda either *nationally or internationally)
• Voluntary achievements
• Contribution to the overall aims of the National Osteoporosis Society

Recipients to date have included:

• Professor Cyrus Cooper: Inaugural Duchess of Cornwall Award (2009)
• Susan Hampshire CBE (2011)