Which Organisations & Links We Include

This website links to a wide range of information sources and organisations outside of SMA UK. There are many more organisations and web pages that contain information relevant to people affected by SMA, but we can’t include them all. Our Information Production Team makes decisions based on our Information Standard guidelines. You can read more about this here.

For medical, health and social care or research information, the criteria for inclusion in this website is if the source meets one or more of the following criteria:

  • Information Standard Accredited
  • Health on the Net (or other recognised Quality Mark) accredited
  • Central or Local Government 
  • NHS 
  • National Institute of Health and Care Excellence (NICE) 
  • An established leader in the field (e.g. Disability Rights UK, Contact)
  • Article in peer-reviewed academic journal
  • Agreed by our scientific and / or clinical care research correspondents

We don’t make recommendations but include options of not-for-profit organisations that provide support, products or services, that we consider relevant to a discussion topic if they meet one or more of the following criteria:

  • Featured or recommended by one of the trusted sources above
  • Adult or Family affected by SMA, or healthcare, education or social care professional recommends
  • We have an established working relationship
  • A relevant example of an established organisation or provider
  • A recognised leader in their field

We very occasionally include for-profit organisations if they meet one of the following criteria:

  • Are operating in a limited market specifically relevant to people in the SMA community, where there are very few providers
  • Are a clear market leader of services relevant to the discussion topic 

Blogs and Networks

Blogs and online networks are included if they're recommended to us by an adult or family affected by SMA and are either:

  • by and for people in the SMA Community, or
  • highly relevant for people in the SMA community

SMA UK doesn't review or endorse any of the content of these blogs or networks and accepts no responsibility or liability for their use. 


Any new source may only be added if they meet our criteria. Decisions are made on a case-by-case basis, based on our knowledge at the time and consideration of our policies and our web disclaimer applies.

SMA UK reserves the right to decline a request to be included in this website.

We review links for relevance and to check they’re working at least annually, but if you find any that are broken, please do Contact Us.

Page last reviewed / updated: May 2021 
Next review due: May 2022