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The NICE Technology Appraisal Programme: Genetic Alliance UK's Respsonse

22 November 2017 / Posted in: Research

Genetic Alliance voices the Rare Disease Community's concerns about the proposed changes to the NICE Technology Appraisal Programme.

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Disability Living Allowance Eligibility

22 November 2017 / Posted in: Information & Support

Contact's research has shown that there is still a lot of confusion about who is entitled to what. Here, they bust some of the myths surrounding the Disability Living Allowance (DLA).

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Biogen SMA Community Update to SMA Europe

17 November 2017 / Posted in: Research

Biogen’s SMA Community Update to SMA Europe covers recent trial results as well as what’s happening in terms of access in Europe and worldwide.

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The Emotional Impact of Living with a Rare or Undiagnosed Condition

16 November 2017 / Posted in: Information & Support

Do you have a rare or undiagnosed condition? OR are you a parent or carer of someone with a rare or undiagnosed condition? Complete Rare Disease UK's survey to share your thoughts and experiences.

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Updates on nusinersen/Spinraza Trials at the World Muscle Society Meeting

15 November 2017 / Posted in: Research

The 22nd International Annual Congress of the World Muscle Society (WMS) was held October 3rd-7th 2017 in Saint Malo, France. While SMA Support UK did not attend, Biogen have uploaded three posters to their repository that were presented at the meeting.

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Join EHRC's Disability Advisory Committee Join EHRC's Disability Advisory Committee

09 November 2017 / Posted in: Our Community

They are looking for high-performing individuals with disability expertise to join their new Disability Advisory Committee. Applications close 24th November.

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Inspirations Autumn 2017 Inspirations Autumn 2017

09 November 2017 / Posted in: Our Community

Follow the link to download the Autumn 2017 edition of our 'Inspirations' newsletter, and the Christmas insert.

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Clinicians and Charities Make Further Appeal to NHS England to Widen Scope of SMA Type 1 Nusinersen EAP

30 October 2017 / Posted in: Research

SMA Support UK has backed the call led by Professor Francesco Muntoni not to limit the treatment only to infants with two SMN2 copy numbers.

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APPG Agrees Access To New Medicines For Rare Conditions Isn't Working

26 October 2017 / Posted in: Research

The All Party Parliamentary Group (APPG) on Rare, Genetic and Undiagnosed Conditions has asked Genetic Alliance UK to lead work to propose a solution.

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Raising Awareness: Baby Loss Awareness Week

19 October 2017 / Posted in: Information & Support

A big thank you to everyone who got involved with raising awareness during Baby Loss Awareness Week. Included in the week was a reception at Westminster and discussions around the Baby Loss debate and National Bereavement Care Pathway.

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