Latest News: Support

Breaking Down Barriers - Rare Pride Project

15 September 2021 / Posted in: Information, Support

Breaking Down Barriers is starting the ‘Rare Pride’ project to seek experiences from those who have a rare condition and are part of the LGBTQIA+ community. Join them on Zoom on Tuesday 28th September at 6pm for their first get together and have your voice heard!

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New Project: 28 Days of Rare

13 September 2021 / Posted in: Information, Support

The not-for-profit arts organisation Same But Different are running this new project where they'll be creating some visually striking images and sharing individual experiences to highlight rare conditions. They're keen to hear from anyone affected by SMA, in the UK, who would be interested in getting involved.

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What Does The SMA Community Want From SMA UK?

27 August 2021 / Posted in: Information, Support

We know there are a lot of good groups and charities out there. We’re trying to find out where we fit in and how we can be most useful. Let us know your feedback and suggestions by taking our survey. Closing date: Sunday 12th September

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Developing Resources About Starting Nursery / School – Can You Help?

13 August 2021 / Posted in: Information, Support

We’ve been talking with a clinical nurse specialist who supports many families, about working together with parents / carers to create some information resources for parents and schools. We want to hear from anyone whose child is already at nursery / school, or who is preparing to go. Please register your interest by end of September.

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Open Inclusion: New Survey

09 August 2021 / Posted in: Information, Support

Open Inclusion provide services in market research, user insight, innovation and service design. They've recently launched a survey, which closes 20th August, from a global technology company wishing to learn about disabled viewers experiences of online video and television / streaming platforms.

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Updates on Covid vaccinations for children aged over 12 years

04 August 2021 / Posted in: Information, Support

The government has updated its Green Book guidance with more detailed information about which children aged 12-15 years are eligible for a Covid vaccine. The Scottish government has also given more detail about its vaccination programme for those aged 12 - 17 years.

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Respond to the New National Disability Strategy Proposal

28 July 2021 / Posted in: Information, Support

Today, the Government has launched a new National Disability Strategy. Whilst we welcome this response, we share the concerns being expressed by the Disability Community Alliances and groups. We will be carefully reviewing what is recommended and will work again with our Young Adults' Network and the alliances and groups we belong to, to respond to the Government’s Consultation Survey. You may also want to share your own views - the survey is open until 11th October.

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New Survey: Being a Teenager With SMA

26 July 2021 / Posted in: Information, Support

Are you aged 13-18? Do you have a diagnosis of SMA? Jordanne has SMA Type 2 and is currently studying a master's degree in clinicial psychology. She's interested to hear more about how SMA affects the emotions and quality of life of people aged 13-18 years.

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Survey: Measuring the Family Impact of a Person's Health Condition

22 July 2021 / Posted in: Information, Support

SMA can affect the lives of partners and family members, but this important impact is often ignored. Researchers at Cardiff University have created a simple questionnaire to measure this impact. They need your help to test this questionnaire and are inviting people with SMA and their partners or other family members (aged at least 18 years) to complete this 5-minute survey.

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JCVI Issues Advice on COVID-19 Vaccination of Children and Young People

20 July 2021 / Posted in: Information, Treatments & Research, Support

The JCVI has looked at the available evidence around vaccinating children and young people under the age of 18. They have now advised that children at increased risk of serious COVID-19 disease are offered the Pfizer-BioNTech vaccine. That includes children aged 12 to 15 with severe neurodisabilities, Down’s syndrome, immunosuppression and multiple or severe learning disabilities.

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