Today is International Paget’s Disease Awareness Day

The first ever International Paget’s Disease Awareness Day takes place on the 11th January 2019. To learn more, attend a live webinar to be held at

Even though the UK has the highest prevalence of Paget’s Disease of Bone in the world, most people will not have heard of it. Indeed, only a relatively small number of cases are satisfactorily diagnosed and referred to a specialist. The condition affects the bone’s normal metabolism, which can result in severe pain, fractures and disability.

Keith Simpson is one of many who has personal experience of the affects that Paget’s disease can have. Paget’s disease caused a traumatic fracture of his leg and whilst this was successfully repaired, he later spent many years in pain, searching for a surgeon who would replace his hip. Through the Paget’s Association, Keith was able to find the help he needed and following successful surgery he decided to help others by becoming a Trustee. Keith said,

Until I found relief, Paget’s caused me tremendous pain and suffering.  It’s imperative that we help those who haven’t yet found the answers and treatment that they so desperately need’. 

The 11th of January marks the 205th anniversary of the birth of Sir James Paget, surgeon to Queen Victoria, and one of the most respected surgeons and pathologists of his time. His name was given to Paget’s disease and the Association is proud to have Sir James Paget’s great, great grandson, Sir Henry Paget, as a Patron. In an interview for the Paget’s Awareness Day, he said,

We must relieve the suffering of those who are not currently receiving the help they need’.

Although there has been progress in alleviating the effects of Paget’s disease, much more remains to be done. The Paget’s Association believes that correct diagnosis is the key, as the condition often goes undetected until complications such as fracture, deafness and bone deformity have already occurred.  In order to ensure that Paget’s is diagnosed and treated in a timely manner, the charity is launching a new clinical Guideline that will help raise awareness of the disease amongst health care professionals and facilitate effective treatment. Commissioned by the Paget’s Association, the Guideline is based on all current available evidence, has been written by a group of international experts in the field, with patient involvement, and has been endorsed by several major international organisations with an interest in Paget’s disease.

To aid communication across the health care system, the Charity has also recently launched a Paget’s Passport, which is a patient held record to help improve communication between healthcare professionals.

Many members of the Paget’s Association are getting involved on the 11th January by wearing blue and green, the Association’s colours, to show support and to help raise awareness of what can be a devastating disease.  Full details about all the Paget’s Awareness Day activities can be found on the Paget’s Association’s website

Learn more - attend a free live webinar!

The Paget's Association is hosting a webinar at 14.00 GMT on the 11th January 2019.  Included will be discussion by Professor Mike Stone regarding the new clinical Guideline for the Diagnosis and Management of Paget’s Disease of Bone. The hour-long event will be chaired by Professor Roger Francis and streamed live from the James Paget University Hospital in Great Yarmouth.
For further details and to view the Paget's webinar live on the 11th January please visit