Browsing from outside the UK?

Although The Lily Foundation is a UK-based charity, we’re proud to support families around the globe by sharing clear, trusted information about mitochondrial disease. We understand that dealing with a new diagnosis can feel overwhelming, with a lot of new and often complex information to take in. That’s why we aim to present everything on our website in a way that’s accessible, easy to understand and supportive – wherever you are in the world.

Content across our site is carefully reviewed by our expert medical board, and we work hard to ensure it remains accurate, reliable and up to date with current understanding and research. While the information itself is globally relevant, it’s important to note that references to direct mitochondrial disease support services, healthcare pathways and clinical care on our site are specific to UK patients and families.

If you’re visiting from outside the UK, you can still benefit from our wide range of resources to help you better understand mitochondrial disease and what it may mean for you or your family. This page is designed to guide international patients and families to the most useful parts of our website, while also signposting to appropriate support and specialist services within your own country.

How this site can help you

Educational resources

Our educational content is designed to help patients, families and professionals better understand mitochondrial disease, no matter where they’re based.

You can access:

• Clear explanations of what mitochondrial disease is
• Symptoms, diagnosis and information on mitochondrial syndromes
• Our patient-friendly Guide to Mitochondrial Disease

Much of the information in these resources is based on internationally recognised knowledge and can be helpful for mitochondrial disease patients and their families outside the UK seeking reliable information.

Research

We fund and support pioneering research into mitochondrial disease, much of which contributes to global scientific understanding and future treatments.

While many of our funded projects are UK-based, the outcomes are shared internationally and form part of the global effort to improve diagnosis and care of rare mitochondrial conditions.

On our site, you can:

• Learn about current mitochondrial disease research projects
• Read updates on scientific breakthroughs
• Understand how research is advancing treatment options

Support outside the UK

The Lily Foundation provides direct mitochondrial disease support services, including patient programmes and personalised support, to individuals and families based in the UK.

If you’re located outside the UK, we recommend connecting with organisations in your own country that can offer local advice, clinical pathways and support networks.

You may find these helpful:

• International Mito Patients (IMP) – Global network
• United Mitochondrial Disease Foundation (UMDF) – USA
• Mito Foundation – Australia
• MitoCanada – Canada
• MitoCon – Italy
• MitoAction – USA
• AEPMI – Spain
• AMMi – France

These organisations can help you:

• Access specialist care in your region
• Understand local healthcare pathways
• Connect with support groups local to you

FAQs

Can I access Lily Foundation support if I live outside the UK?

Our direct support services are designed for UK-based patients and families. However, international visitors are very welcome to use our global information resources available on this website.

Is your medical information relevant in the US or other countries?

Yes. Much of the information we provide reflects internationally recognised research and clinical understanding of mitochondrial disease. However, healthcare systems and clinical pathways vary by country, so you should always consult a local specialist for personalised medical advice.

How do I find a mitochondrial disease specialist in my country?

We recommend contacting national mitochondrial disease organisations (such as those listed above), who can guide you to recognised specialists and centres within your country. Your primary healthcare provider may also be able to refer you to an appropriate expert.

Do you fund research outside the UK?

Our funding is primarily focused on UK-based research institutions. However, the knowledge generated contributes to worldwide scientific progress and benefits everyone affected by mitochondrial disease.

Wherever you are in the world, you’re part of the global mitochondrial disease community. The Lily Foundation are committed to sharing knowledge, raising awareness and supporting progress that benefits patients all over the globe.