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Latest News: Information

Information, Support & Social Weekend April 2018

15 February 2018 / Posted in: Information

We have been delighted with the response to this event, however, this does now mean that we are completely full to capacity for the whole weekend so any further booking requests we take will go on a waiting list.

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

14 February 2018 / Posted in: Information

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.

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Contact: Latest Guides and Information

14 February 2018 / Posted in: Information

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.

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Updated Factsheet from Disability Rights UK

08 February 2018 / Posted in: Information

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.

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Rare Disease Implementation Plans for England Published

01 February 2018 / Posted in: Information, Treatments & 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.

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Transition to Adult Services

11 January 2018 / Posted in: Information

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.

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Education, Health and Care Plans: Examples of Good Practice

02 January 2018 / Posted in: Information

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.

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

19 December 2017 / Posted in: Information, Treatments & 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.

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Invitation to the Scottish SMA Community to voice your views

19 December 2017 / Posted in: Information, Treatments & 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.

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Petition: Supermarkets To Commit To Providing Changing Places Toilets In Stores Within 18 Months

29 November 2017 / Posted in: Information

A petition has been set up calling for the 6 main supermarket chains to commit to providing Changing Places toilets in their stores within the next 18 months. Please consider signing this petition.

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