Fundamental disease patients can experience severe isolation, deprivation, and poor health. Most receive no specialist support and many experience life-long social exclusion. Support usually comes in the form of a patient group: ‘kitchen-table’ organisations set up by people who are living with fundamental conditions or who have a family member affected. They transfer their skills with no previous experience in the third sector or in healthcare.
Yet research shows that patient groups, when they exist, act as a vital source of information and support for patients. Patient groups are also the first port of call for pharmaceutical companies and academics preparing clinical trials for possible treatments, yet it is often unclear how they can work together to achieve their goals.
Findacure works to unite marginalised fundamental disease patients and build a stronger, more dynamic community to take control of their diseases and meet the challenges of patient support and developing medical research.
Source: FindacureTags: Mental Health