Latest News: Support

DBC Petition: 'Don’t Leave Disabled People Behind’

17 November 2020 / Posted in: Information, Support

More than 119,000 people have signed a petition calling for the two million disabled people, lone parents and families who receive legacy benefits, to stop being denied the £20 a week uplift that millions on Universal Credit were given at the start of the pandemic. It was handed to the Chancellor today, ahead of the spending review.

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Free Advice on Legal Challenges to Health and Welfare Disputes

16 November 2020 / Posted in: Information, Support

Genetic Alliance UK are hosting this session with Kirsty Stuart from Irwin Mitchell Solicitors who will be offering free, practical advice and answering any questions. Taking place Tuesday 24th Nov at 10am.

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New Survey: Stakeholder and Public Involvement at the UK NSC

16 November 2020 / Posted in: Information, Support

Public Health England would like to find out your views on how the UK National Screening Committee involves stakeholders (people and organisations with a professional or particular personal interest in screening) and the public in its work. Closes 13th December.

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Out of the Shadows - Report by The Neurological Alliance

12 November 2020 / Posted in: Information, Treatments & Research, Support

This new report, launched today, is calling for better treatment and care for the 150,000 children and adults living with a rare neurological condition, including SMA, in England.

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Big Social Care Survey 2020

10 November 2020 / Posted in: Information, Support

The Care and Support Alliance are running this survey to find out what it has been like needing care, in England, during the pandemic. It should take around 15 minutes to complete, and closes on 4th December.

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I:DNA Immersive Art Installation

02 November 2020 / Posted in: Information, Treatments & Research, Support

Prof Felicity Boardman has done extensive research on the social and ethical implications of genomic medicine from the perspectives of people with genetic conditions. I:DNA is a virtual, immersive art installation which is an artistic representation of all this research. You can ask questions ahead of a live Q&A on 11th November.

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Beacon: How Continuing Healthcare Will Resume Post-COVID 19

29 October 2020 / Posted in: Information, Support

In August 2020, new government guidance set out how NHS Continuing Healthcare (CHC) would be reintroduced in England from 1st September 2020, along with a new Hospital Discharge Policy. Beacon have provided further information around this.

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Write to your MP: Please Increase Legacy Benefits

27 October 2020 / Posted in: Information, Support

It’s been 6 months since DWP increased Universal Credit by £20 a week but failed to give the same increase to those on legacy benefits. Now is our opportunity to make sure the Chancellor doesn’t let over two million people go without the £20 per week increase for another year. Write to your MP.

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Cell and Gene Therapy Engagement Workshops

23 October 2020 / Posted in: Information, Treatments & Research, Support

Genetic Alliance UK are organising a series of virtual workshops on the topic of cell and gene therapies, sometimes referred to as Advanced Therapy Medicinal Products (ATMPs). Date to register closes 26th October.

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Survey About the Treatment of Childhood Neurological Conditions

23 October 2020 / Posted in: Information, Support

The British Paediatric Neurology Association and James Lind Alliance have just launched a Priority Setting Partnership survey to help define the Top 10 unanswered questions about the treatment of Childhood Neurological Conditions. Find out more and take the survey (closes Jan 2021).

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