Latest News: Support

Same But Different - 'A Glimmer of Hope' Calendar Photography Competition

03 September 2020 / Posted in: Information, Support

The winning images will be used to create a calendar that will celebrate the people behind rare conditions, as well as helping to raise awareness. The competition is open now and runs until the 22nd September.

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New Extensions to the Access To Work Scheme Announced

02 September 2020 / Posted in: Information, Support

Covid-19 is changing the way we work and impacting working environments and arrangements. With many employers asking workers to adapt to a new environment, Access to Work can play a key role in supporting disabled people to retain, return to and move into employment.

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Contact - Back to School Advice (England)

28 August 2020 / Posted in: Information, Support

The charity Contact for Families with Disabled Children, have published some guidance around this to help answer questions and concerns that parents may have ahead of their children going back to school in September.

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Grant Support Available to Families on Lower Incomes in England

28 August 2020 / Posted in: Information, Support

National charity Family Fund, received £10m from the Department for Education to provide extra grants. The grants can be used to buy computers and play equipment as well as household items such as cookers and fridges.

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Survey Exploring Access to the Standards of Care for People who have SMA in the UK

28 August 2020 / Posted in: Information, Support

The John Walton Muscular Dystrophy Research Centre in Newcastle invites one respondent for each child / adult who has SMA to take part in gathering this important information that will help guide future practice.

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Campaign for Step-Free Access at all Train Stations

24 August 2020 / Posted in: Information, Support

The Step-Free Access Campaign, set up by Ian Cook, is about petitioning for step-free access at all railway stations, and on trains, as so many are still inaccessible for disabled people. Add your voice to the campaign.

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Back to School – Webinar & Online Q&A

18 August 2020 / Posted in: Information, Support

Many parents of children with serious health needs have concerns and unanswered questions about their children returning to school in September. WellChild have organised an online Q&A, on 20th August, with a panel of experts from Department of Education, law, health and education to help answer some of these burning questions.

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Share Your Views on Care Coordination for Rare Conditions

14 August 2020 / Posted in: Information, Support

Researchers at University College London are looking for participants for a study which looks at how care of people who have rare conditions is coordinated in the UK, and how patients and healthcare professionals who treat rare conditions would like them to be coordinated.

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Motability - One Big Day Online

14 August 2020 / Posted in: Information, Support

Motability's 2020 One Big Day events have had to be cancelled due to Covid-19. However, on 10th September, they are hosting a One Big Day Online event through their Facebook page.

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Webinar Recordings

12 August 2020 / Posted in: Information, Support

As part of Community Connections, leading health professionals talked with Martyn Sibley about the impact of Covid-19 on access to nusinersen treatment for children and adults, in three webinars held between July and August. You can now watch them on our website.

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