Patient Support Organisations 

NCHA Patient Advisory Council

NCHA work with a range of advisors. One very important group is our Patient Advisory Council. The group is made up of interested parties involved in supporting the homecare services model of care to patients and carers in the UK. The group members listed below, however the group is flexible and at times additional patient group members or specialists may be invited to meetings or to join the council. Click here to view the Patient Advisory Council terms of reference.

If you are part of an organisation and you would like to be included on this page please contact us using the button below.

The NCHA Patient Advisory Council consists of the following members:

Cystic Fibrosis Trust

Cystic Fibrosis Trust is the charity uniting people to stop cystic fibrosis (CF). Our community will improve care, speak out, support each other, and fund vital research as we race towards effective treatments for all. We wont stop until everyone can live without the limits of cystic fibrosis.

www.cftrust.org.uk

 

National Axial Spondyloarthritis Society (NASS)

We are the National Axial Spondyloarthritis Society (NASS) and we seek to transform the diagnosis and care of people living with axial SpA.

It’s an invisible and misdiagnosed condition. Often leaving people feeling powerless, in increasing pain and extreme exhaustion.

So we campaign policy makers for early diagnosis and better services. We work with the NHS to get axial SpA identified and diagnosed quickly. We’re determined that everyone receives effective care. We make sure people with axial SpA get the latest information and the support they need to tackle living with the condition. And we build an active community, online and through our local branches across the UK. We are with them all the way. Axial SpA may work silently. But we don’t.

www.nass.co.uk

 

National Kidney Federation (NKF)

The National Kidney Federation (NKF) are proud to be the largest kidney patient charity in the UK. Run by kidney patients, for kidney patients.

They run the only free-to-call UK Helpline dedicated to kidney patients with two fully trained, experienced advisers providing a 5 day per week service to kidney patients, carers, healthcare professionals and renal units.

The NKF Helpline 0800 169 09 36. 

https://www.kidney.org/

 

National Rheumatoid Arthritis Society (NRAS) and JIA at NRAS

NRAS provide information and support services for those affected by rheumatoid arthritis (RA), their families, friends, carers and health professionals.

JIA-at-NRAS is part of the National Rheumatoid Arthritis Society (NRAS). They design, coordinate, fund and deliver a comprehensive and wide range of high quality products and services for all affected by RA and JIA.

For further information please see the appropriate website.

www.nras.org.uk or www.jia.org.uk

 

(Support & advocacy for people on home artificial nutrition)

PINNT has three key objectives, support & advocacy, education and information resource.  Membership is for people on HAN, carers, healthcare professionals and industry partners. Encouraging and supporting life with HAN. Using their voice to advocate for the needs of people on HAN for daily living, products and services.

For further information please visit their website www.pinnt.com

 

Additional Patient Support Organisations

If you are part of an organisation and you would like to be included on this page please contact us using the button below.

Terrence Higgins Trust

Patient

Multiple Sclerosis Trust

The Psoriasis and Psoriatic Arthritis Alliance