British Retinitis Pigmentosa Society (BRPS)
also known as RP Fighting Blindness
Retina International Representative: Stephen Jones
Chief Executive: David Head
Address
British Retinitis Pigmentosa Society
P.O. Box 350
MK 18 IGZ Buckingham
UK
Telephone: ++441280821334
Fax: ++441280815900
Email: stephenjones@brps.org.uk
E-mail: david@brps.org.uk
Website: www.brps.org.uk
Description
BRPS is a patients’ organisation for people with RP. The society was established in 1976. Today BRPS has nearly 3,000 members.
BRPS is a registered charity (no 271729) and is a member of the Association of Medical Research Charities.
BRPS is an important part of an international scientific research effort to find the genetic causes of RP and to seek treatments and a cure for the disease.
The society prides itself on running a “tight ship” with modest administration costs. Apart from a Chief Executive and 5 part-time staff, all the work of the society is carried out by volunteers.
BRPS has a network of 20 branches spread throughout the UK many of which are very active in terms of local support and fundraising activities.
Research
In the 32 years of its existence, BRPS has funded over £8 million of medical research projects and, reflecting the increased pace of research activities, about £4 million has been spent since 2000.
Over the last 3 decades some important scientific advances have taken place, including identification of some of the different genes causing varying forms of RP, and a number of these advances have taken place in the UK from research funded by BRPS.
Support
BRPS provides a number of information and welfare services for its members, including a helpline (particularly important for the newly diagnosed).