Latest News: Information

Patient and Caregiver Survey: Understanding Your Views on Spinal Muscular Atrophy Treatments

19 August 2019 / Posted in: Information, Treatments & Research

This survey by Acaster Lloyd Consulting Ltd, is designed to understand your views about the importance of different aspects of SMA treatments and any trade-offs you would consider making. The study findings will be used to help healthcare decision-makers (e.g. NICE in the UK) understand how important different aspects of SMA treatments are to adults and caregivers of children with SMA Types 2 and 3.

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Do You Know Someone Who Deserves or Needs a Brand-New Garden Makeover?

13 August 2019 / Posted in: Information

ITV1's garden makeover show 'Love Your Garden with Alan Titchmarsh' is back in Autumn 2019. They're looking for families / individuals to apply or nominate someone who could benefit. Closing date 30th September.

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NCB Survey: Experiences Of Using SEND Information, Advice and Support Services

18 July 2019 / Posted in: Information, Support

The National Children’s Bureau are carrying out a survey about people’s experience of using SEND information, advice and support services. Your answers to the questions will help the Government understand how good the services are.

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Cardiff Airport Invites Passengers To Join PRM & Disability Forum

11 July 2019 / Posted in: Information

On 4th September, Cardiff Airport is holding a meeting to explore ideas, and to agree the scope for their proposed Passengers with Reduced Mobility (PRM) and Disability Forum. Members of the public and third sector organisations are invited to attend.

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Contact's Resources For A Stress-Free Summer

11 July 2019 / Posted in: Information, Support

The summer holidays are very nearly upon us and Contact for Families with Disabled Children have put together their top tips for making summer as stress-free and fun as possible – this includes a link to their guide “Holidays, Play and Leisure”.

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Sign Open Letter Calling On NHS England To Keep Its Promise To Protect The Children’s Hospice Grant

01 July 2019 / Posted in: Information, Support

Together for Short Lives has found that NHS and local council cuts are hitting lifeline care for seriously ill children. Gabriella Walker, a bereaved parent, is inviting children’s palliative care services, families of children with life-limiting conditions, and the general public to add their name to her letter to the Health and Social Care Secretary, calling for urgent action.

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Survey on Accessible Transport and Parking

01 July 2019 / Posted in: Information, Support

Business Disability Forum has launched this survey seeking the views of disabled people or those who have a long-term health condition, on using public transport and accessible parking, in the UK. Survey closes 8am on Wednesday 10th July.

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Children’s Hospice Week: 17th – 23rd June

14 June 2019 / Posted in: Information, Support

This is the only week in the year dedicated to raising awareness of children’s hospice and palliative care services across the UK, and those they support. This year’s theme is ‘Moments that Matter’.

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SANDS Awareness Month - Finding Your Way

03 June 2019 / Posted in: Information, Support

June is SANDS awareness month. 2019's theme is ‘Finding Your Way’ after pregnancy and baby loss and seeking support in a way that is right for anyone needing it, with a particular focus on support for men and helping them find a way through grief. Find out more here including how to support the campaign.

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'Give it Back' Campaign launched by DCP

03 June 2019 / Posted in: Information, Support

Today sees the launch of 'Give it Back' - a new campaign from the Disabled Children's Partnership to encourage the government to fill the £434million gap in social care funding for disabled children in England through the upcoming Spending Review.

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