Patient Support Groups
Members of patient groups provide people living with the same conditions or similar with practical and emotional support.
They are also valued contributors to the research process, providing researchers with their own unique lived experience and perspective, and their views on proposed research: are the ideas acceptable and/or feasible?
Some of the patient support groups we work with are below; but there are many more.
If you are a group organiser/chair of a patient support group and you’d like someone from our Patient and Public Involvement team to visit your group and talk about how you could get more involved in research, please contact email@example.com.
Brainbow is a unique partnership between three independent charities – Anna’s Hope, Camille’s Appeal and Tom’s Trust, working with Addenbrooke’s Hospital – to fund and provide a pioneering rehabilitation service in the East of England for children with brain tumours.
Brainbow is part of the Paediatric Oncology and Haematology Department at Cambridge University Hospitals. With a multi-disciplinary team including Physiotherapists, a Speech and Language Therapist, Occupational Therapist and Clinical Psychologists, they help provide children with brain tumours with specialist rehabilitation support and continuity of care throughout their journey, from their diagnosis, during their hospital admission and beyond.
Breathe Easy Cambridge Support Group is a local patient support group who meet in Cambridge on the 3rd Tuesday of every month at St Catherine’s Road, Cambridge, CB4 3 XJ between 14:00 and 16:00. The group are part of the British Lung Foundation and more information can be found on their website.
Breathe Easy Cambridge Support Group supports patients, carers and family members living with a lung condition.
Cambridge Rare Disease Network (CRDN) is a charity working to build a regional community of people in Cambridgeshire to address the unmet needs of rare disease patients, their families and the professionals who work with them.
The charity undertakes community activities, awareness-raising events and closer collaborations with scientists and researchers developing new treatments. Trustees include some of the UK’s foremost experts in rare diseases, and their founding members come from diverse backgrounds in academia, business, healthcare and patient support networks.
Medical research and drug development is transforming the outlook of countless people living with diseases that were formerly untreatable. CRDN’s challenge is to develop a vibrant, informed and active regional rare disease patient community and create a climate that fosters innovations in health, education and social care through providing widespread community events and activities and stimulating interest and awareness in the unmet therapeutic needs of patients.
Cambridgeshire Lupus Group gives a local point of contact to help, support and give general advice to people with Systemic, Cutaneous and Discoid Lupus and associated conditions.
The group supports members through information and education about Lupus and the latest developments in its treatment. By arranging events, local support meetings, publishing a local newsletter and working with health professionals to increase the awareness of lupus.
Cambridgeshire Lupus Group supports the young person’s lupus group at Addenbrooke’s Hospital.
Facebook: Cambridgeshire Lupus Group
Systemic Lupus Erythematosus (SLE or lupus) is a presently incurable, but in most cases manageable, illness of the immune system, a condition in which the body’s defence mechanism begins to attack itself through an excess of antibodies in the blood stream causing inflammation and damage in the joints, muscles and other organs.
The majority of lupus patients are young women aged 16-55 but men and even young children can be affected.
Lupus may be triggered by various means and can present in a bewildering number of ways, even to the extent of mimicking other illnesses such as Rheumatoid Arthritis or Multiple Sclerosis. The cause of lupus is not known, although research has provided evidence implicating heredity, hormones, environmental factors and infections including viruses.
Headway Cambridgeshire provides specialist services to people with an acquired brain injury and other neurological conditions and their families and carers.
Brain injury can affect anybody, at any time. Headway Cambridgeshire supports people through these life-changing events, building bespoke services to meet their needs and aspirations and helping people to live as independently as possible and achieve their full potential.
With two hubs in Peterborough and Fulbourn, they offer a programme of activities and specialist services aimed at recovery and social rehabilitation. Working across the county of Cambridgeshire, the charity provides information, hospital liaison, occupational therapy, community enablement and the opportunity to participate in social events.
Lipodystrophy UK is a patient support group for patients who have the rare disease lipodystrophy, which covers a group of conditions characterised by the lack of subcutaneous fat (normal fat storage under the skin). Lipodystrophy can be generalised (total fat loss) or partial (partial fat loss) and familial (inherited) or acquired (not inherited).
The inability to store fat under the skin causes fat to be stored in places such as the muscles and liver which leads to severe metabolic complications including insulin resistance, diabetes, dyslipidaemia, heart disease, kidney disease, fatty liver disease and many others. Currently, there is no cure for Lipodystrophy and only the secondary complications can be managed/treated. Lipodystrophy affects approximately 1 in 1 million people across the world.
The Papworth Pulmonary Fibrosis Support Group provides information, support and the opportunity for patients with pulmonary fibrosis to meet others with the same or similar chest diseases.
Meetings are held every two months, usually on the second Friday of the month, at The Hub, Cambourne Community Centre, Cambourne CB23 6GW. Free parking is available directly outside the venue.
The meetings last for approximately 1 ½ hours. Tea, coffee and light refreshments are provided. The meetings are free to attend and patients, relatives and friends are all welcome. As well as topics related to living with pulmonary fibrosis, more light-hearted activities are included at some meetings. Sufficient time is always allowed for members to chat together, as this sharing of experience and mutual support is found to be highly valued by all.
The Oliver Zangwill Centre provides high quality, evidence-based, neuropsychological assessment and rehabilitation to adults with an acquired brain injury.
The Centre also offers consultation, supervision and support-worker training. The clinical team consists of highly experienced clinical psychologists, speech and language therapists, occupational therapists and therapy assistants.
They support clients to understand how their brain injury has disrupted their life course, their sense of identity and their participation in personally meaningful activities. With this understanding, clients begin to achieve new life goals and feel comfortable ‘in their own skin’.