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  1. Search services and support
  2. Health situation of cared-for
  3. Physical conditions
  4. Illness and diseases
  5. Rare diseases

Rare diseases services

Healthtalk

A website patient information sharing resource Read more

Published: 8th August, 2017

Updated: 25th January, 2020

Author: Pip Armitage

Myositis UK

Myositis is a rare autoimmune disease that causes muscle weakness. There are different types of the condition. Myositis UK seeks to improve the diagnosis, treatment, understanding and prognosis of myositis by providing information, relieving isolation, raising funds, and funding research. They are based in Southampton. Read more

Published: 6th October, 2019

Author: Pip Armitage

Niemann-Pick UK (NPUK)

NPUK provide practical and emotional support, advice and information to those affected by Niemann-Pick diseases and facilitate research into potential therapies.. Read more

Published: 16th November, 2017

Author: Pip Armitage

SWAN UK

Approximately 6,000 children are born in the UK each year with a syndrome without a name – a genetic condition so rare that it is often impossible to diagnose. Without a diagnosis it can be difficult to access basic information and support. SWAN UK (syndromes without a name) is the only dedicated support network available for families of children and young adults with undiagnosed genetic conditions in the UK. It is run by the charity Genetic Alliance UK. Read more

Published: 3rd October, 2019

Author: Pip Armitage

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Showing 10 of 4

Latest

  • Summertime Stroll & Ice Cream in the Park

    Summertime Stroll & Ice Cream in the Park

    Join Carers in Southampton for a stroll around Southampton Common, meet other local carers and enjoy complimentary refreshments & ice cream!

  • Linda's Story

    Linda's Story

    Linda cares for her Mother with demetia.

  • Dementia Support Group: Bitterne | Wednesday 27th May

    Dementia Support Group: Bitterne | Wednesday 27th May

    In association with Dementia UK, join us together with an Admiral nurse for this drop-in meeting.

  • Dementia Support Group: Highfield | Tuesday 17th May

    Dementia Support Group: Highfield | Tuesday 17th May

    In association with Dementia UK, join us together with an Admiral nurse for this drop-in meeting.

Most read

  • Carer's Cards

    Carer's Cards

    Save you money out and about and recognise your caring role

  • Carer's Assessments

    Carer's Assessments

    Carer's assessments evaluate your need for support and services and eligibility for a personal wellbeing payment

  • Assisted Shopping - Sainsbury's Shop On-line and Telephone Service

    Sainsbury's Assisted Shopping scheme helps people who are housebound, cannot travel to the shops or cannot manage online shopping by allowing them to make shopping orders over the telephone. You can access this service by calling 0800 328 1700, Mon-Fri 9am-5pm.

  • Contact us

    Contact us

    How to get in touch

  • Southampton General Hospital Ward Numbers

    This is a list of the contact telephone numbers for the main wards at University Hospital Southampton

  • What we offer

    What we offer

    Click to find quick links for support workers, carers cards, emergency plans and carers assessments

  • Emergency planning

    Emergency planning

    Being prepared for emergencies is always a good idea as a carer. Take a look below and help put some of your worries to rest.

  • Singing groups and choirs in Southampton

    A new study identifies the healing power of singing in a group, and urges us all to have a go. A list of many choirs in Southampton can be found here.

  • Refer a Carer

    Refer a Carer

    We are open to referrals of adult unpaid carers for support, information, carers cards, emergency plans and statutory carers assessments.

  • Southampton City Council Adult Health & Social Care

    If you are caring for an adult over 18, (including young carers), and are affected or needing to self isolate and you have no other additional social care you can contact Southampton City Council Adult Health & Social Care. Phone 023 8083 3003

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Carers assessments evaluate your need for support and services and eligibility for a personal wellbeing payment.


Find out more here

Theo's Story

Theo's Story

Theo, 22, cares for his disabled Mother whilst studying. Read more

Published: 7th April, 2022

Nick's Story

Nick's Story

Nick discusses caring for his adult son, Kevin, who is bipolar. Read more

Published: 7th April, 2022

Summertime Stroll & Ice Cream in the Park

Summertime Stroll & Ice Cream in the Park

Join Carers in Southampton for a stroll around Southampton Common, meet other local carers and enjoy complimentary refreshments & ice cream! Read more

Start: 24th August, 2022 at 10:00am

End: 24th August, 2022 at 12:00pm

Published: 10th August, 2022

Author: Emma Sautereau

Location: The Cafe at The Horthorns, Southampton Common, The Avenue, Southampton, SO15 7NN

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