Official Launch of the UK SMA Newborn Screening Alliance Official Launch of the UK SMA Newborn Screening Alliance

04 August 2022 / Posted in: Information, Treatments & Research, Support

Today, the UK SMA Newborn Screening Alliance has launched its website and social media channels to update the Community with progress towards newborn screening.

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Introducing Becci and Stacey! Introducing Becci and Stacey!

28 July 2022 / Posted in: Information, Support

We're thrilled that both Becci, Outreach Worker, and Stacey, Trust Fundraiser, have recently joined the staff here at SMA UK! Click here to read more about them and their backgrounds.

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A Fairer Future: towards a more equitable delivery of care for those with rare diseases and conditions in the UK A Fairer Future: towards a more equitable delivery of care for those with rare diseases and conditions in the UK

27 July 2022 / Posted in: Information, Support

As a contribution to the evolution of the delivery plans in the UK Rare Diseases Framework, Public Policy Projects (PPP) held a series of workshops, where the SMA Community was represented, each targeted at a key framework priority.

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New Living With SMA Podcast Episodes New Living With SMA Podcast Episodes

27 July 2022 / Posted in: Information, Support

Have you seen the latest Living With SMA podcast episodes - About Toilets and You've Got A Friend In Me? Find out more, and subscribe on your favourite podcast platforms, to keep up to date with all the latest episodes!

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Update on Let's Play Fair: Inclusive Playgrounds Update on Let's Play Fair: Inclusive Playgrounds

27 July 2022 / Posted in: Information, Support

The Community knows just how important it is for disabled children to be included, feel safe and have fun. So, while we campaign for the Government to make change, parents can give each other tips and ideas to support where we are now.

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Invitation to take part in an in-depth research interview Invitation to take part in an in-depth research interview

22 July 2022 / Posted in: Information, Treatments & Research

Adept Field Solutions, a healthcare market research company, are working on behalf of a pharmaceutical company to arrange in-depth interviews with a small number of adults (age 18 years and over) who have SMA Type 2 or 3.

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SMA Awareness Month 2022  SMA Awareness Month 2022

18 July 2022 / Posted in: Information, Support

Join us during August to help raise funds and awareness of SMA! This month, we'll be shining a spotlight on SMA, how we work with and support the SMA Community, and how you can support our activities.

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Update on the Call for Evidence for New 10-Year Plan To Improve Mental Health Update on the Call for Evidence for New 10-Year Plan To Improve Mental Health

14 July 2022 / Posted in: Information, Support

Last month we shared the call for evidence from the Department of Health and Social Care who are looking for evidence on which to build a new 10-year plan to improve mental health. Many thanks to everyone that contributed to this important piece of Government research, giving a voice to the SMA Community. Read the responses here.

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Call for Fair and Equitable 1:1 Medical Support in Mainstream Schools Call for Fair and Equitable 1:1 Medical Support in Mainstream Schools

14 July 2022 / Posted in: Information, Support

On 23rd April, working with MDUK and TreatSMA, we wrote to the departments of Education and Health highlighting the problems with 1:1 support for children with complex needs in mainstream schools. We were pleased to receive a reply from Ofsted on 7th July.

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Online Focus Group: Moving from paediatric to adult SMA services

12 July 2022 / Posted in: Information, Treatments & Research, Support

For people living with or caring for someone with SMA, moving from paediatric to adult care can be a daunting prospect. To understand areas where further support is needed, Biogen would like to hear your experiences of transitioning from paediatric SMA services to adult SMA services. Closing date for responses is Sunday 17th July.

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