Tel: 01789 267520

Latest News: Information & Support

Your Views on the Need for Access to Emotional and Psychological Support

16 February 2018 / Posted in: Information & Support

This is a vital element of support for individuals and families to manage and cope with muscle-wasting conditions. The All Party Parliamentary Group (APPG) for MDUK's new inquiry into access to psychological support is now taking evidence. You can give your views.

Read full story

Information, Support & Social Weekend April 2018

15 February 2018 / Posted in: Information & Support

Unfortunately, childcare on Saturday for this event is full and accommodation is getting very tight. However, if you were hoping to come, please email us or send in a booking and we will see if there's anything we can offer.

Read full story

Petition to End Prescription Charges for People with Long-Term Conditions

14 February 2018 / Posted in: Information & Support

England is the only part of the UK that charges for prescriptions. It's time that everyone with a long-term condition has access to free prescriptions. Sign the prescription charges coalition petition.

Read full story

Contact: Latest Guides and Information

14 February 2018 / Posted in: Information & Support

Contact have published a number of different guides and information sheets that you might find helpful, including their ‘Money Matters’ guide which outlines all the financial help you may be entitled to.

Read full story

Updated Factsheet from Disability Rights UK

08 February 2018 / Posted in: Information & Support

The comprehensive factsheet will be useful for anyone who is claiming PIP (Personal Independence Payment) for the first time, or who has been in receipt of DLA and invited to apply for PIP instead.

Read full story

Rare Disease Implementation Plans for England Published

01 February 2018 / Posted in: Information & Support, Research

The Department of Health and Social Care and NHS England have published their implementation plans for the UK Strategy for Rare Diseases. England is now in line with Scotland, Wales and Northern Ireland who already have plans in place.

Read full story

Transition to Adult Services

11 January 2018 / Posted in: Information & Support

Together for Short Lives has produced this factsheet to help parents think about the different elements of transition that need to be planned for and to provide tips to help the process feel as smooth as possible.

Read full story

Education, Health and Care Plans: Examples of Good Practice

02 January 2018 / Posted in: Information & Support

These resources have been produced to help practitioners write good quality EHC plans. The Council for Disabled Children suggests they may also be useful for parents, children and young people and those supporting them.

Read full story

Invitation to parents/main carers in the UK whose children have received nuisnersen treatment to voice your views

19 December 2017 / Posted in: Information & Support, Research

Wherever you live in the UK, we would like to be able to include your views in our Patient Group Submission to the Scottish Medicines Consortium.

Read full story

Invitation to the Scottish SMA Community to voice your views

19 December 2017 / Posted in: Information & Support, Research

The Scottish Medicines Consortium (SMC) will shortly be assessing the treatment nusinersen (Spinraza) to decide whether it can be used by NHS Scotland for the treatment of SMA Types 1, 2 and 3. We need your help with this.

Read full story