Cardiomyopathy UK

Cardiomyopathy UK is the leading national charity for people affected by the heart muscle diseases cardiomyopathy and myocarditis. The charity offers a clinical nurse helpline, clinical education for clinicians, information resources and advice on how to live well with the condition.

The charity understands the importance of peer support and we offer a network of support groups throughout the UK which give patients and their families an opportunity to hear from expert speakers and meet others similarly affected in their local area.

For more information and upcoming meeting dates for the Cambridge support group, see the website:

https://www.cardiomyopathy.org/shared-experiences/cambridge-support-group 

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 Kate Slaven, Mesothelioma Specialist Nurse on 01223 639591.

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.

Visit the Norfolk Zipper Club website 

Pulmonary Hypertension Association

The Pulmonary Hypertension Association (PHA-UK) is and organisation that represents the interests of patients with pulmonary hypertension and their families. The association aims to provide support, understanding, and information for all those people whose lives are touched by Pulmonary Hypertension.

Their website has extensive information on the causes and treatment of PH and a useful list of links of interest.

PH Association website

Royal Papworth Hospital Pulmonary Fibrosis Support Group

The Royal Papworth Hospital Pulmonary Fibrosis Support Group provides support for patients and their families living with pulmonary fibrosis. 

Meetings are regularly held at;

The Hub
High Street
Cambourne
Cambridgeshire
CB23 6GW

Meetings usually include; a presentation on a topic of interest often led by a medical specialist; social activities; and information sessions keeping members up to date with national events and development related to pulmonary fibrosis. 

Further social events are also arranged including an annual picnic and various outings.

For more information visit www.papworthpfsupportgroup.org.uk or email info@papworthpfsupportgroup.org.uk

Telephone: 07721 435274

Royal Papworth Pulmonary Hypertension Patient Support Group

The Royal Papworth Pulmonary Hypertension Patients Support Group is a friendly, welcoming group run by patients for patients with pulmonary hypertension (PH) and their carers.

We are well supported by the pulmonary hypertension staff at Royal Papworth Hospital. We welcome members of all ages, and not just from Royal Papworth Hospital but other pulmonary centres as well.

We are planning to have these meetings online too so if you live anywhere in the country you can be able to be included. 

We will meet three times a year as a group. We have guest speakers for the meetings that talk about various aspects of pulmonary hypertension, including research into new therapies, and presentations are given by the PH specialist nurses, PEA nurses, pharmacists, physiotherapists etc.

In November, we have our very popular Christmas party where members bring their wider families, if they wish, including children/grandchildren. We have a buffet lunch at all our meetings which is donated by members of the support group. 

We hope we provide a place where PH patients can relax and ask questions and gain support from others in the same situation.

If you are interested in joining our group please contact us at pulmonary.hypertension@outlook.com

Royal Papworth Transplant Patients Group

The Royal Papworth Transplant Patients Group is a patient-led body open to all pre- and post- heart and/or lung transplant patients.

As well as providing a focal point for links into the Transplant team on any current issues, it holds four Social and Support group meetings for patients each year, funded by donations. These well-attended meetings have regular guest speakers and allow patients and their families to meet in a friendly, non-clinic environment and share any experiences or concerns that they may have.

A free buffet and tea/coffee is provided. There is also an active private Facebook page for patients entitled Royal Papworth Transplant Social and Support Group

The committee can be contacted by email on royalpapworthtransplantgroup@gmail.com.

 

Dates of Social and Support Meetings 

All meetings are currently cancelled owing to coronavirus. 

When meetings do take place, they happen from 12:00 - 15:00 in the Village Hall, Ermine Street, Papworth Everard CB23 3RD

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.

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.

www.uktransplant.org.uk