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Help Genetic Alliance UK Produce the Insurance Information you Need

21 August 2017 / Posted in: Information & Support

Genetic Alliance UK is now running a survey to understand patients' experiences including any challenges they face, or concerns they have, when applying for insurance. This information will help them to update the resources available on their website.

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RG7916 FIREFISH trial now enrolling patients (though not in UK)

16 August 2017 / Posted in: Research

Roche has begun to enrol SMA patients in the FIREFISH Phase II trial of their splice-modifying drug, RG7916 (also known as RO7034067).

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The Disabled Children's Partnership: Top Tips for the Summer Holidays

16 August 2017 / Posted in: Information & Support

The Disabled Children's Partnership recognise what holidays are like for disabled children and young people, and their families. Here, they list some of their top tips.

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Age of children who will be able to access the EAP for SMA Type 1 going forwards

07 August 2017 / Posted in: Research

We have clarified that, from now on going forwards (until we hear from NICE), children will have to be diagnosed by 7 months of age to be eligible. If you have a child who has already been diagnosed with SMA Type 1 who is older than this and not already on the EAP, please read more.

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NHS England Announces Interim Policy on EAP for SMA Type 1

04 August 2017 / Posted in: Research

All hospital costs for administering nusinersen to patients with SMA Type 1 will be provided by NHS England.

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New Campaign: Tell the PM to Stop Universal Credit Cuts

02 August 2017 / Posted in: Information & Support

Contact a Family are concerned that around 100,000 parents with disabled children are at risk of being worse off on Universal Credit. Sign their petition to the prime minister to reverse cuts to child disability payments under Universal Credit.

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We're Looking for New Trustees We're Looking for New Trustees

01 August 2017 / Posted in: Our Community

We are currently looking for new trustees to join our trustee board to provide governance and strategic direction to the charity, and to support the small office team who are based in Stratford-upon-Avon.

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Our Brand New Coffee and Cake Day Packs are Here! Our Brand New Coffee and Cake Day Packs are Here!

01 August 2017 / Posted in: Help Us

Each pack includes prize-winning recipes, inspirational stories, posters, balloons and bunting to help make your event a success. Order yours for free now!

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Brief Report from the All Party Parliamentary Group that focused on nusinersen

21 July 2017 / Posted in: Research

Held on 18th July, this covered the current provision of nusinersen for infants with SMA Type 1 through the Expanded Access Programme (EAP) and what progress there has been towards the possibility of wider access.

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The One Show Making Film about the Issues Disabled People Face when using Public Transport

19 July 2017 / Posted in: Information & Support

They are looking for people to record short videos on their phones/cameras when they genuinely encounter a problem when using public transport.

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