Latest News: Information

#VoteSEND - Make Disabled Children a Priority in the General Election

20 November 2019 / Posted in: Information, Support

There are 1.1 million disabled children in the UK, but the system designed to support them and their families is failing. The Disabled Children's Partnership want to hear from all parties and candidates, as we approach the general election, as to what they will do to mend the system. Find out how you can get involved.

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World Children's Day - Jane Velkovski

19 November 2019 / Posted in: Information, Support

11-year-old Jane Velkovski from North Macedonia, who has SMA, will be joining UNICEF and speaking at a global summit at the United Nations Headquarters in New York. Children and young people will be there leading a call to action to protect and promote child rights.

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Changes to Deadlines and Timescales of CHC Appeals Processes

15 November 2019 / Posted in: Information, Support

It has been confirmed that CCGs are now able to set the time that individuals have to challenge an eligibility decision for NHS Continuing Healthcare, leading to a 'postcode lottery'.

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Survey About What Progress There Has Been With Children's Access To Nusinersen In The UK

14 November 2019 / Posted in: Information, Treatments & Research, Support

SMA UK, MDUK and TreatSMA have launched this survey for the paediatric SMA Community to gather information about people’s experiences of trying to access nusinersen (Spinraza). Closing date is Sunday 1st December. An adult survey will follow in due course.

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New Survey: Your Views On Living With A Rare Disease

30 October 2019 / Posted in: Information, Support

The Minister for rare disease at the Department of Health and Social Care, Baroness Blackwood, has announced a national conversation to understand how we can better care for people who are living with a rare disease. Survey closes 29th November.

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Action For Access

25 October 2019 / Posted in: Information, Treatments & Research, Support

Genetic Alliance UK have launched this campaign to improve access to potentially life-changing treatments for people affected by rare diseases (including SMA). We're backing their campaign and calling for #ActionForAccess. Find out how you can get involved too.

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Children who have SMA Wanted for Interview about New Product Development

10 October 2019 / Posted in: Information, Support

Healthcare Fieldwork's client are looking to interview children who have SMA and who are aged between 5-15 years old (and parents / carers) at their offices in Cambridge. Participants will receive £120 as a thank you for taking part.

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Three ‘Pillars’ to Deliver Better Support and Care for Disabled Children and Their Families

10 October 2019 / Posted in: Information, Support

The Disabled Children's Partnership, of which we are members, have identified three pillars to underpin and ensure improved support for disabled children and their families. Read more in this blog from Stephen Kingdom, DCP Campaign Manager.

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Patients & Public Wanted To Help With Research About Swallowing Disorders In Neuromuscular Conditions

08 October 2019 / Posted in: Information, Treatments & Research

The purpose of this study is to help find out what the priorities are for people with a neuromuscular condition who have swallowing difficulties, and the experiences of family members and carers. The first meeting has been set for 25th October so if you'd like to register your interest, please do so as soon as possible.

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Quicksilver Media Looking For Families Accessing Spinraza To Take Part In Documentary

25 September 2019 / Posted in: Information, Treatments & Research, Support

Quicksilver media are currently making a documentary about the possible implications for drug budgets of any UK-US trade deal, for Channel 4's Dispatches strand, and are looking for families with children who have recently (within the last 4 months) started treatment with Spinraza / nusinersen.

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