[row][two-third]

The opening speech of People Powered Health, a Nesta Health Lab conference held last week, was given by Simon Stevens, Chief Executive of NHS England. His speech focused on the idea that healthcare is a social movement: it responds to and is informed by changes in society, societal values, and more concrete demands from society.

This idea resonates with Findacure’s work in building rare disease patient groups. Patient groups are organisations that represent the interests of people facing a certain rare disease. As patient groups raise the profile of rare diseases and call for changes in the healthcare system, we are beginning to see changes in the way rare disease patients are valued and treated.

This set us thinking about all the multiple ways patient groups are an essential part of the rare disease social movement. Here are our five key themes…

1. Reaching out to patients and supporting them in their day-to-day challenges
Having a rare disease can be an incredibly isolating experience. Rare disease patient groups reach out to patients and provide them with support and reassurance, reducing feelings of loneliness and stress. Patient groups can also help patients find legitimate medical information, by linking to trusted websites and medical advisors. This allows patients to avoid the confusing and often dangerous information available on the Internet and help them access the medical support they need to build a better quality of life.

2. A point of information for other interested parties
One of the biggest issues rare disease patients face is a lack of understanding of their condition by the people around them: family and friends, the government, researchers, and members of the general public. Patient groups are an important source of information: for instance, they can give family and friends layman explanations of the cause, effects and management of the disease, and can raise public understanding of day-to-day challenges.

3. A vehicle for research collaboration
Most rare disease patients have little hope for a treatment. Only 400 of the 7,000 identified rare diseases have approved treatments, as research and development costs are often calculated as being too high considering the small patient populations. We believe collaboration between patients, the pharmaceutical industry, clinicians, and academics is necessary for the rare disease community to move forward and confront this pressing challenge. Patient groups are well situated to foster this collaboration: they are a point of contact for collaborators; they are able to encourage patient involvement in research; they have detailed information about disease progression and symptoms; and they can have a very valuable input in trial design, representing the patient voice.

4. Determination and motivation for change
Most patient group representatives have had direct experience of a rare disease: either they are a patient themselves, or it has impacted the life of a loved one. The difficulties they face mean they are the most determined to campaign, fundraise, and drive for change.

5. Unified voice in political lobbying and campaigning
When motivated individuals come together around a common cause, their combined voice is significantly stronger than the sum of its parts. Being unified and focused on a more specific goal moves a campaign higher in the public eye and makes it much more difficult to ignore.

By providing training to patient groups, we at Findacure are ensuring that they have the capacity and ability to fulfil these five areas of need. You can find out more about our work here. All our patient group training is free for beneficiaries, meaning we rely on generous donations from trusts and the public. Please click here if you would like to support our worthwhile projects.[/two-third][one-third]findacure-120914-small-149IMG_2879 SMALLERFindacure-180116-1142014.05.13 Julie Swimming for Findacure12265774_10208424623996325_8159331700655244915_oIMG_2874 cropped[/one-third][/row]

5 reasons why strong patient groups hold the key for rare diseases

by Libbie Read time to read: 2 min
0