Latest News: Information

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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Study with Caregivers of People with SMA

03 September 2021 / Posted in: Information

Evolve is running this study, recruiting caregivers of people with Spinal Muscular Atrophy (SMA) Type 3, on behalf of Novartis Gene Therapies. The goal is to collect data regarding the use of resources linked to the management of SMA from the perspective of caregivers, as well as time spent caring for patients and any financial impact. Participants will be paid £50 for their time.

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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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Survey For Young People with Neuromuscular Conditions About Fatigue

20 August 2021 / Posted in: Information

A trainee clinical psychologist at the University of Bath is running this survey about fatigue for young people (age 11-18 years) who have neuromuscular conditions. The survey takes approximately 20-30 minutes to complete and there is also an optional prize draw for participants to enter.

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MDUK Muscles Matter 2021 SMA (Paediatric Focus) Seminar

19 August 2021 / Posted in: Information, Treatments & Research

Muscular Dystrophy UK are holding this online seminar on Monday 23rd August, 10am-12pm, to keep you up-to-date with the latest research into SMA. You will have the chance to hear from experts about progress into research and treatments, and get the opportunity to ask questions.

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NICE methods, Process and Topic Selection for Health Technology Evaluation: Proposals for Change Consultation Now Open

19 August 2021 / Posted in: Information, Treatments & Research

This eight-week consultation on the final stage of NICE’s methods and processes review is now open for any responses by 13th October. We will attend meetings with partners and alliances to review what is being proposed and join with responses.

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Children's Heart & Lung Services: Seeking Your Views

13 August 2021 / Posted in: Information

Patients with a heart or lung (or breathing) condition, their carers and families, are being invited to help explore ways that might improve and provide heart and lung care in the future.

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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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