RP Fighting Blindness (registered charity number 1153851) was founded in 1975 by people with RP. The group was concerned about the lack of knowledge surrounding the disease within the medical profession, the absence of a treatment or cure, and the poor support available for people with RP.
Originally called The British Retinitis Pigmentosa Society, the charity has since evolved into an internationally respected medical research charity and a nationwide organisation providing patient support and information with over 5,000 supporters. It remains grounded in its volunteer roots as it seeks to help patients live with RP and fund cutting edge research into the causes of and potential treatments for the disease. A team of staff based in Buckingham run the charity day-to-day and fundraise, administer the research grant programme and deliver services, with the support of many volunteers, without whom the charity could not exist.
The charity’s main aims are:
- To stimulate and support high quality medical research with the aim of increasing scientific understanding of retinitis pigmentosa (and related conditions).
- Find treatments or cures for the condition that, when developed, are accessible to anyone affected.
- To signpost or provide good quality and universally-accessible information and support services for people affected.
Patient support and services
A fundamental concern for the organisation is to ensure patients are not only provided with clear and accurate information about RP and treatments, but also to protect them from sometimes dangerous misinformation. RP Fighting Blindness is committed to guiding patients to safe and reliable advice about treatments and updates its website and materials when genuine progress is made by researchers, acting as a central resource for verified news.
The charity provides support for people affected by retinitis pigmentosa at times of emotional stress and practical difficulty; the RP Helpline (0845 123 2354) and the Telephone Befriending services are delivered by a team of dedicated volunteers, all of whom either have RP themselves or are related to someone with RP. The helpline answers over 1,000 calls and hundreds of emails each year, many from people who would not be able to access this type of support anywhere else.
With a grant from the NHS via the Genetic Alliance, RP Fighting Blindness developed “The RP Pathway”. This online resource maps out the journey for someone with RP, from initial diagnosis through to accessing various support services and sources of information. The pathway signposts the way for someone affected as well as providing information to pass on to others, such as teachers, employers, friends and family. This resource has proved incredibly useful for newly diagnosed patients with RP and provides a comprehensive information and fact-based service in simple language.
Along with on-the-ground patient support services, a huge amount of work is done to support RP research. We fund world-class research so scientists have a better understanding of the condition and progress the transition of this understanding into treatments. It will endeavour to influence other funders to contribute to the costs of RP research, either through lobbying or mutually beneficial partnership funding as appropriate. RPFB sees collaborative fundraising and collaborative research funding as increasingly important over the period.