A voluntary opportunity to represent the UK SMA community in Europe 

As a member of SMA Europe, SMA UK is looking for an adult living with spinal muscular atrophy (SMA) to become one of our UK delegates to SMA Europe. 

This is a voluntary, unpaid role, offering an opportunity to represent the UK SMA community and contribute to conversations and activities taking place across Europe. 

SMA Europe brings together national SMA organisations from across Europe with a shared aim of improving the lives of people living with SMA. Its work includes research, treatment and care, healthcare policy and access, capacity building, advocacy, communications and awareness. 

At the heart of SMA Europe’s work is a commitment to ensuring that the experiences, needs and priorities of people living with SMA and their families are heard. 

As an SMA UK delegate, you will help make sure that the voices and experiences of the UK SMA community are part of those European conversations. 

About the voluntary role 

SMA Europe delegates are volunteers who represent its national member organisations. Together, the delegates make up SMA Europe’s General Assembly. 

As an SMA UK delegate, you would volunteer your time to represent SMA UK and the wider UK SMA community, rather than only your own individual experiences. 

There is no salary or payment for undertaking the delegate role. 

Where attendance at an agreed meeting or event requires travel, SMA UK will discuss travel, accessibility, personal assistance and other reasonable expenses with the delegate in advance, in line with the relevant SMA UK and SMA Europe arrangements. 

What does a delegate do? 

As a volunteer UK delegate, you may: 

• attend SMA Europe General Assembly meetings and other relevant meetings, either online or in person 

• travel within Europe when in-person attendance is required 

• contribute to discussions about issues affecting people living with SMA 

• share UK perspectives, experiences and priorities 

• listen to and learn from SMA organisations and people living with SMA in other European countries 

• contribute to consultations, projects or working groups or committees where appropriate 

• keep in regular contact with SMA UK 

• seek the views of the wider UK SMA community when appropriate 

• feed information, learning and opportunities from SMA Europe back to SMA UK and the UK community 

• help strengthen relationships between SMA UK, SMA Europe and other European SMA organisations. 

SMA Europe works across areas including research, therapy and care, healthcare systems, policy and access, capacity building, communications and outreach. You do not need to be an expert in all of these areas. 

Who are we looking for? 

We welcome applications from adults aged 18 or over who: 

• live with SMA 

• live in the UK 

• understand that this is a voluntary, unpaid position 

• have an interest in representing and supporting the wider SMA community 

• are comfortable listening to views and experiences which may be different from their own 

• are able to communicate their own views clearly while also representing broader community perspectives 

• are interested in learning more about SMA research, treatment, care, access, policy and advocacy 

• can work collaboratively and respectfully with people from different countries and backgrounds 

• are willing to keep in regular contact with SMA UK 

• can commit to the role for at least two years 

• are able and willing to travel within Europe, with appropriate accessibility arrangements and support. 

Previous advocacy, committee or charity experience would be useful, but is not essential. 

Commitment 

The role requires a commitment of at least two years. 

The amount of time required may vary depending on SMA Europe’s meetings and activities. As this is a voluntary position, SMA UK will work with the delegate to make the role manageable alongside their other commitments, health, work, education and personal life. 

How to Apply 

If you would like to be considered for the voluntary role of UK Delegate to SMA Europe, representing SMA UK, please send us a short letter explaining why you would like to take on the role and why you think you would be a good fit. 

Your letter does not need to be formal, and there is no expectation that applicants will have previous professional advocacy experience. We are interested in your lived experience, your motivation and what you feel you could bring to the role. 

In your letter, please tell us about: 

• Your connection to SMA, including your lived experience of SMA and anything you feel is relevant to your application. 

• Why you are interested in becoming the UK Delegate and what appeals to you about representing the UK SMA community at a European level. 

• What you could bring to the role, for example, your skills, experience, interests, knowledge or personal qualities. 

• Your involvement with the SMA community, this could be through SMA UK or elsewhere and can be formal or informal. 

• Any relevant advocacy or community experience, for example, contributing to campaigns, consultations, research, events, support groups or speaking about issues affecting people living with SMA. 

• Your ability to listen to and represent different experiences and perspectives within the UK SMA community, rather than only your own. 

• Your communication skills and any experience of contributing to meetings, discussions, working groups or events. 

• Your interest in European SMA issues and in learning from and working alongside SMA organisations and representatives from other countries. 

• Your availability and ability to commit the time needed to participate actively in the role. 

• Your ability to travel to relevant SMA Europe meetings and events, including travel outside the UK where required. 

• Anything else you would like us to know about why you would make a good UK Delegate. 

We recognise that people bring many different kinds of experience to advocacy. You do not need to be an experienced campaigner, public speaker or SMA expert to apply. We particularly welcome people who are keen to listen, learn, contribute and help ensure the experiences and priorities of people living with SMA in the UK are represented. 

Send your letter, or any questions you may have about the role to:  portia.thorman@smauk.org.uk

Please keep your letter to approximately 1–2 pages. Deadline for applications: Monday 2nd November 2026.