Patient Support Groups
Members of patient groups can provide researchers with unique lived perspectives. Through sharing their experiences and insights, patient groups are valued contributors, able to consider the acceptability and feasibility of research proposals for people with the same or similar condition to their own.
If you are a group organiser/chair who would like a member of the Patient and Public Involvement group to visit your group and explain more about getting involved in research, please contact firstname.lastname@example.org
https://cambridgebrc.nihr.ac.uk/research/neuroscience/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 are 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.
Doing this through 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. 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 providing information, hospital liaison, occupational therapy, community enablement and the opportunity to participate in social events.
Lipodystrophy UK support those with the condition, family and friends.
Lipodystrophies are disorders of adipose tissue (fat) characterized by selective loss of fat from various parts of the body. There are several different types of lipodystrophies and the degree of fat loss may vary from very small depressed areas to near complete absence of adipose tissue. The extent of fat loss may determine the severity of metabolic complications related to insulin resistance, such as diabetes mellitus and high levels of serum triglycerides. Some patients may have only cosmetic problems while others may also have severe metabolic complications.
Inherited lipodystrophies are caused by mutations (alterations or blips) in a gene. Several genes responsible for different types of inherited lipodystrophies have been identified. These include AGPAT2 (1-acylglycerol-3-phosphate-O-acyltransferase 2), BSCL2 (Berardinelli-Seip congenital lipodystrophy 2) in Congenital Generalized Lipodystrophy (CGL), Lamin A/ C (LMNA) gene in Familial Partial Lipodystrophy Dunnigan variety (Familial Partial Lipodystrophy), and PPARG (peroxisome proliferator-activated receptor gamma) gene in familial partial lipodystrophy.
Facebook: LipodystrophyUK Twitter: @LipodystrophyUK
The Papworth Pulmonary Fibrosis Support Group has been established to provide 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.
Contact: Steve Jones, Secretary
Tel: 07887 854940
The Oliver Zangwill Centre provide high quality, evidence-based, neuropsychological assessment and rehabilitation to adults with an acquired brain injury.
The Centre also offer 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’.