Virtual Event - Respiratory Management of Neuromuscular Patients in the Era of New Treatments

26 February 2021 / Posted in: Information, Support

This one day virtual symposium, for professionals and parents / families of children, is taking place on 28th May with keynote speaker Professor Anita Simonds (consultant in respiratory and sleep medicine). Places are limited so book your tickets asap.

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CHMP Publishes Positive Opinion on Risdiplam

26 February 2021 / Posted in: Treatments & Research

CHMP has recommended licensing approval of risdiplam for the treatment of 5q SMA in patients 2 months or older, with a clinical diagnosis of SMA Type 1, 2 or 3, or with 1-4 SMN2 copies. A final decision regarding approval is expected from the European Commission in the next two months, but could be as early as the end of March. Read more and what this means for the Early Access to Medicines Scheme (EAMS).

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Risdiplam and Salbumtamol - Clincians Answer a Question from Families

24 February 2021 / Posted in: Treatments & Research

Families have been asking if there is any advice about taking salbutamol at the same time as risdiplam.Our thanks to clinicians from the SMA REACH network who have provided an answer.

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Survey for Unpaid Caregivers of those who have SMA

24 February 2021 / Posted in: Information, Support

This global study aims to collect data on health care resource use, out-of-pocket costs and time costs for the families of those who have SMA in various countries in the world. Everyone who fully completes the survey will receive a gift card as a thank you for taking part.

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Sibs Survey - Impact of Lockdown on Siblings of a Disabled Brother or Sister

19 February 2021 / Posted in: Information, Support

The UK charity Sibs is interested in finding out more about the impact this latest lockdown and the Covid-19 pandemic is having on siblings up to the age of 18, who have a brother or sister who is disabled, has SEND or a long-term health condition.

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Weekly Covid Testing Available for Personal Assistants in England

17 February 2021 / Posted in: Information, Support

NHS Test and Trace is making weekly COVID-19 testing available to PAs working in adult social care in England. PAs will be eligible for testing if they are required to come within 2 metres of an adult (over the age of 18) in order to provide care and support.

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Fancy a £50 Voucher to Spend in Contact’s Online Fledglings Shop?

15 February 2021 / Posted in: Information, Support

Contact has gift cards worth £50 each for families in England to spend in the charity’s Fledglings shop. This offer is open to eligible families who might need some extra support during the Covid-19 pandemic and could benefit from Fledglings’ sensory toys, clothes and essential equipment.

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Priority Group 6 Vaccine Rollout - Write to your GP

15 February 2021 / Posted in: Information, Support

If you are in priority group 6 and haven’t been contacted yet, you may want to write to your GP to make sure they know who from your home needs vaccinating and that you are keen for your vaccinations as soon as possible. This means there is a record of your request.

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NHS England's Advice to Clinicians about Offering Risdiplam EAMS

12 February 2021 / Posted in: Treatments & Research

This framework of advice is designed to assist clinicians to understand and interpret the risdiplam EAMS. Though we welcome this advice about who should have access to the risdiplam EAMS, we are very aware that many, particularly adults, are still unable to access nusinersen or risdiplam at their treatment centre. We continue to work hard to change this as a matter of urgency.

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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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