 | THE NATIONAL ASSOCIATION FOR THE RELIEF OF PAGET'S DISEASE |
The National Association for the Relief of Paget's Disease was registered as
a charitable organisation in 1973, with the main aim of encouraging, promoting
and assisting research into the diagnosis, treatment and prevention of the
disease. Its founder was the late Mrs Ann Stansfield MBE whose husband suffered with
Paget's disease for 27 years, initially being wrongly diagnosed and treated for
other conditions. The disease was finally diagnosed as affecting his spine,
pelvis, skull and limbs. When Mrs Stansfield asked where her husband could
attend for treatment she was met with the lack of understanding and seeming
disinterest which sadly still prevails today. Although having reached retirement age herself, Mrs Stansfield worked
tirelessly for many years to raise awareness of Paget's disease, spending many
hours writing to universities, hospitals and Government departments at home and
abroad. Mrs Stansfield's exemplary fund-raising has enabled the Association's
Scientific Advisory Committee (which was formed to decide where funds could be
best utilised) to approve many worthwhile research projects which undoubtedly
have led to the current understanding of Paget's disease, its management and
treatment. The presentation of the M.B.E. by the Queen in 1983 was a just and fitting
tribute to Mrs Stansfield, although her greatest reward has been to see an
expansion of services to sufferers and increased funding of exciting and
productive research projects. As a registered charity the NARPD depends entirely on voluntary
contributions and is justly proud of its achievements. The United Kingdom is a
world leader in Paget's disease research and the NARPD will continue, as far as
its limited resources allow, to support worthwhile research which will uncover
the cause of Paget's disease and permit either prevention or cure of the
condition. How does the NARPD help sufferers? By increasing public awareness of Paget's disease and by alerting members
of the medical profession to the problems of sufferers, in particular those who
are severely affected, the NARPD is confident that more and more patients will
be directed towards earlier diagnosis and assessment, and safe and effective
management of their condition. Many patients may be living alone, be in pain and have no one to talk to;
the NARPD provides a vital telephone support service aiming to help sufferers
who feel the need to talk to someone with a knowledge of Paget's disease with
whom they can share their experiences. The association also circulates regular
newsletters to its members, and encourages the setting up of local support
groups which benefit sufferers whilst assisting with much needed fund-raising
and publicity. The NARPD is anxious to encourage the setting up of specialised treatment
centres for Paget's disease at regional hospitals throughout the United
Kingdom, particularly where there is already a specialist with a keen interest
in bone problems. This could then be linked to the development of Paget's
disease centres at rural hospitals where these facilities are not yet
available. Since its inception in 1973, the NARPD has committed more than £250,000
to supporting worthwhile research at universities and hospitals nationwide.
Although much more research is desperately needed to find the cause of Paget's
disease, considerable progress is now being made in the understanding and
management of the disease. By becoming a member of the NARPD you will benefit from the information and
advice service available, and in return the trustees hope you will feel able to
offer whatever support you can. A list of specialists nationwide who treat Paget's disease is available on
request.
National Association for the Relief of Pagets Disease
1 Church Road
Eccles
Manchester
M30 0DL  0161-707 9225
 0161 789 6755
 106064.2032@compuserve.com
 http://www.paget.org.uk/
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