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Patient support groups

The Pulmonary Hypertension Association

The Pulmonary Hypertension Association (PHA-UK) is and organisation that represents the interests of patients with pulmonary hypertension and their families. Their website has extensive information on the causes and treatment of PH and a useful list of links of interest. PHA-UK website www.phassociation.uk.com

The Pulmonary Hypertension Association (UK) aims to provide support, understanding, and information for all those people whose lives are touched by Pulmonary Hypertension.

PH Matters Group

The purpose of the Pulmonary Hypertension Group is to provide fellowship and education support to pulmonary hypertension patients, their families, physicians, researchers and the public at large.

Norfolk Zipper Club

A support society based in Norfolk and North Suffolk. It aims to help people before and after cardiac surgery. The club has regular meetings and fundraising events throughout the year. Please contact them for further details. An information leaflet about the service is available on request. Norfolk Zipper Club website www.norfolkzipperclub.org.uk

British Cardiac Patients Association

The British Cardiac Patients Association is the independent voice of the patient and carer. They also provide support for patients, carers and their families who are in any way touched by coronary heart disease. British Cardiac Patients Association website www.bcpa.co.uk 

Immunology & Lung Defence Support Group

The Immunology Service at Papworth Hospital is part of the Respiratory, Infection Inflammation and Immunology Service. The service provides a regional, super-regional and national integrated service for patients with recurrent respiratory infections. The support group which is run by patients, host meetings throughout the year where patients can discuss treatments, socialise with fellow patients and discuss topics with invited speakers.

Mesothelioma Support Group

The Mesothelioma Support group meets at the Hemingford Abbots Village Hall, High Street, Hemingford Abbots every month and is aimed at patients and their carers. Talks have included relaxation, breathlessness and complementary therapies. There is also a separate monthly meeting specifically for carers so they can share their concerns and experiences with others in a similar situation. Refreshments are provided at both of these meetings. Contact Gerry Slade, Mesothelioma Specialist Nurse on 01480 830541 ext 4889.

Pulmonary Fibrosis Support Group

The Papworth Hospital Pulmonary Fibrosis Support Group has been established to provide information, support and the opportunity for individuals with pulmonary fibrosis to meet others with the same or similar chest diseases. The group is aimed at individuals with chronic scarring chest conditions such as idiopathic pulmonary fibrosis.

Patient Experience Panel

The Patient Experience Panel gives patients and the public the opportunity make a real difference in developing and improving the services at Papworth Hospital. Patient Experience Panel (PEP) section

Transplant Sport UK

Transplant Sport UK is a registered charity whose main aim is to raise awareness of the need for organ donation in the UK and worldwide. Through organising sports and social events for transplant recipients it aims to show the benefits of organ donation and prove that you can lead a normal and active life again after transplantation The Transplant Sport UK website www.transplantsport.org.uk

UK Transplant

UK Transplant helps save thousands of lives every year. As part of NHS Blood and Transplant, its key role is to ensure that organs donated for transplant are matched and allocated to patients in a fair and unbiased way. UK Transplant website www.uktransplant.org.uk

 

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