Information for People Living Outside the UK
Information for People Living Outside the UK
Page last updated: July 2026
We are a small UK charity. We regret we cannot respond to inquiries from non-UK residents with SMA on an individual basis.
Some people ask for information for their child. Others ask for information for themselves. To make it easier to read we just say ‘I’ in questions and ‘you’ in our answers.
We hope the information on this page may answer some of your questions and be helpful to you.
These sections of our website are probably most useful. But, they are written for people in the UK with access to UK health services.
These sections of our website are probably most useful. But, they are written for people in the UK with access to UK health services.
The Family Guide to the Standards of Care for SMA > sets out what care anyone who has SMA should have, wherever they live. It has been translated into 10 different languages. You can download copies.
There is an English website version of the Family Guide >.
This care is important with or without drug treatment.
In the UK we have the SMA Care UK > project. Any new guidelines for the UK will appear on the page in this link. Please be aware that best care practice that they will describe will consider what is possible in the UK which may well not be possible in many countries.
Cure SMA >, in the USA offers clinical resources which may be helpful.
SMA Australia > also has videos of exercises at home which might be helpful. Scroll down their page to find them
To get free NHS healthcare in England your child will need to be “ordinarily resident” in the UK. This means you must be living in the UK on a lawful and properly settled basis for the time being. You may be asked for evidence of this.
For a detailed definition of what being ordinarily resident means, see the GOV.UK guidance.
You or your child will also have to meet the eligibility criteria for the treatment. You can find out more in this pages:
Onasemnogene Abeparvovec (ZOLGENSMA™) >
If you are thinking of moving to the UK, you can find further advice in these pages:
Moving to England from EU countries or Norway, Iceland, Liechtenstein or Switzerland >
Moving to England from outside the European Economic Area (EEA) >
If you have a child age 0 – 18 years who has SMA we suggest you contact Great Ormond Street Hospital (GOSH) with this question.
GOSH Private & International Care >
We regret we do not know of a hospital for adults who have SMA that offers this service.
We suggest you:
Talk to your doctor about:
- What they know about the treatment.
- How they think it might help you.
- Your health and any risks of travel for treatment.
- How close you need to be to the treating hospital and for how long. In case of complications from the treatment.
- Any risks there might be having a treatment provided in one place and ongoing care in another.
- Where in the world you may be able to access treatment.
Talk to the overseas hospital about all of the above, plus:
- Their eligibility criteria and referral process.
- How they would assess you.
- How often you would need to attend.
- How long treatment would continue.
- What follow up is needed at the overseas hospital.
- Where you would stay during and after treatment.
- How much it would all cost:
- the treatment
- the travel
- accommodation
- Would any costs be covered by the overseas hospital.
We suggest you also talk to your family and supporters about:
- Travel insurance to cover your health and other needs.
- Travel insurance for anyone going with you.
- Managing the commitment practically, emotionally and financially. It may be on an ongoing basis.
We understand people’s desperation. But we worry about the pressures this may create for families and adults. We also worry about the pressures on the clinicians who want to treat them.
As well as thinking about what we suggest in question 6, we suggest you think through:
- If a treatment is repeated or ongoing:
- How much is needed for it to start and then continue?
- What happens if money runs out and it then stops?
- If a treatment is a ‘one off’:
- you may still need regular and close follow up.
- As well as the cost of treatment, you will have other costs:
- travel
- food and accommodation
- travel insurance to cover your health and other needs
- travel insurance for anyone going with you
- unexpected delays or a longer time away
These drug companies can be contacted by email:
Spinraza™ / nusinersen
Biogen: MedInfoUKI@biogen.com
Zolgensma™ / onasemnogene aboparvovec
Novartis: medinfoemea.gtx@novartis.com
Evrysdi™ / risdiplam
Roche: medinfo.uk@roche.com
PhysioNet > aims to transform lives by providing essential mobility, disability and medical equipment to individuals in need across the globe.
Talk to your doctor to find out if this is possible. Ask how it would be managed and what risks there may be for you.
Some parts of the world have unlicensed ‘clinics’ that offer unconventional treatments. This is usually for large sums of money.
They may have a website that looks good. But the claims they make about a treatment have not been proved.
Always talk to your doctor before going any further.
If a clinician is asked to treat a patient ‘off label’, for example a patient with a clinical diagnosis of an SMA Type for which there is no licensing authority, they are potentially liable if something goes wrong.
Clinicians are also potentially liable if they use an untrialled / unapproved combination of treatments and something goes wrong.
ClinicalTrials.gov >is a place to learn about clinical studies from around the world.
SMA Europe has also set up a Global Clinical Trials Finder >
SMA UK has no input into either of these website and cannot guarantee they are up to date and accurate.
Patient registries that collect information from patients with SMA sometimes share information about clinical trials. You can find out if your country has a national SMA Patient Registry >