ThinkBIGGER! - ITV Production Training Scheme

11 February 2021 / Posted in: Information, Support

Want to get into TV? ThinkBIGGER! has joined forces with ITV to launch their brand-new Production Training Scheme which aims to attract candidates from backgrounds that are currently underrepresented in the industry, including those from lower-socio economic backgrounds, those from Black, Asian and minority ethnic communities, and disabled people. Applications are open until 19th Feb.

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Call on the Chancellor to End Child Poverty

10 February 2021 / Posted in: Information

We’re one of 80+ organisations to have signed a statement in support of people meeting their MP virtually this week. This is to call on the Chancellor to put #ChildrenAtTheHeart of a budget to #EndChildPoverty.

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NICE’s Public Consultation on Proposals for Changes to its Processes

08 February 2021 / Posted in: Information, Treatments & Research

This includes how NICE selects topics for its Highly Specialised Technologies programme which is one that has greatly concerned and affected the rare conditions community. The consultation is open until 15th April.

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Disability Benefits Consortium - Pandemic Poverty Report

03 February 2021 / Posted in: Information

This report brings together the findings of the DBC's survey on how the pandemic has impacted disabled people’s finances and highlights the need to extend the Universal Credit £20 uplift to legacy benefits, and to make it permanent.

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Biogen: January Community Update on European / Global Access to Nusinersen

01 February 2021 / Posted in: Treatments & Research

Biogen has provided the latest update on access to nusinersen treatment around the world. There are now 29 European countries that have access to nusinersen via regular reimbursement, and this latest statement gives an updated situation in France.

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NICE’s Zolgensma Appraisal to go to a Second Committee Meeting

01 February 2021 / Posted in: Treatments & Research

NICE has announced that there will now be a second committee meeting on 10th February 2021. Registration to book to attend this virtual meeting is now open - closes 4pm on Friday 5th February.

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SMA UK's Submission to NICE Methods review

29 January 2021 / Posted in: Treatments & Research

NICE’s 6-week public consultation on the case for changing how it evaluates new medicines for use by the NHS started in November 2020. We attended a number of consultations and discussions run both by and for Patient Groups. You can read the key points we made in our December response to the consultation.

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Risdiplam Early Access to Medicines Scheme (EAMS) - Clinicians Answer Further Questions

29 January 2021 / Posted in: Treatments & Research

Families and adults have been asking more questions about the clinical requirements for access to the EAMS. Our thanks to clinicians from the SMA REACH network who give answers, here.

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Thank You and Welcome – Changes to our Trust Board

28 January 2021 / Posted in: Information

Heartfelt thanks for all he has done to our long-serving Trustee Hugo Van Vredenburch, who steps down next month but remains committed to supporting our fundraising efforts. We are delighted to welcome Dr. Anne-Marie Childs - Consultant Paediatric Neurologist - as a new Trustee.

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Treatment Decisions in Newly Diagnosed Families with SMA

27 January 2021 / Posted in: Treatments & Research

A group of patient representatives from SMA Europe responded to European neuromuscular experts’ consensus statements on gene replacement therapy for SMA. Their short article, where they highlight some of the considerations that must be taken into account when considering treatment, was published in the European Journal of Paediatric Neurology.

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