Our Information Publications Service

We are a small team committed to ensuring that all the information we produce that’s covered by the Information Standard complies with its requirements. If you want to know more about how we produce our information, please get in touch here.

We aim to provide user friendly accessible information for:

  • People affected by SMA that:
    • tells them about the condition, its management, services available, any treatment options and research updates
    • enables them to communicate effectively with medical and other professionals and play an active role regarding their choice of care and treatment, for themselves or their children.
  • Professionals who are new to the condition and in a support role that:
    • enables them to understand quickly the nature of the condition and the challenges that are faced.
  • Professionals in a support role that:
    • tells them about service and support options and research and treatment updates.

We try to keep our information jargon-free and use as plain English as possible. We are grateful to our Writers and Reviewers Panel who assist us with our publications and are variously health and social care professionals, medical experts in their field and members of the SMA community. We constantly review and work on improving access to our information website pages.

We currently have insufficient resources and demand for the routine translation of our publications or for audio or braille versions. We will respond to requests for these on a case-by-case basis in as positive a way as possible.

Our information sheets and Living with SMA web pages give SMA-related health and social care information and are within the scope of the Information Standard. Hard copies of these are free and can be ordered and posted by the Support Services team. Please go to our Publications Order Form. Health / social care information statements that appear in our promotional literature are drawn from these publications. 

Our Research and Treatment pages keep the SMA Community up-to-date in what is a very rapidly changing world, our updates covering clinical trials, treatment breakthroughs and reviews of clinical care research are either written by one of our professionally qualified Research Correspondents or translated from source material into more accessible language by our Information Production Team. 

Other information we publish is, to the best of our knowledge, accurate and up-to-date. Our monthly E-news and twice-a-year SMA Matters display the Information Standard logo to show that we are an accredited organisation.

Our Community Voices pages are the personal experiences of people affected by SMA. These are not within the scope of the Information Standard but again we take care to ensure their accuracy if they contain any condition specific information.

April 2019

Please also note as follows:

Spinal Muscular Atrophy UK Disclaimer

Spinal Muscular Atrophy UK (SMA UK) holds responsibility for the accuracy of the information it publishes. Neither the Scheme Operator nor the Scheme Owner have any responsibility whatsoever for costs, losses or direct or indirect damages or costs arising from inaccuracy of information or omissions in information published on the website on behalf of SMA UK.

SMA UK makes every effort to ensure the information in these web pages is complete, correct and up to date, this cannot be guaranteed. SMA UK does not necessarily endorse the services provided by the organisations listed in our information sheets.