Aim

A rare diagnosis shouldn't mean financial crisis. We guide families through benefits and planning so they can focus on living, not surviving

Too many families are facing financial pressure in silence.

Who are we, and what is our project about?

Metabolic Support is the only UK patient organisation dedicated to supporting the 40,000+ people living with one of over 500 Inherited Metabolic Disorders (IMDs). Since 1981, we have provided trusted, specialist support to individuals and families navigating the complex and lifelong challenges of rare metabolic disease.

For people living with an IMD, the impact goes far beyond health. There is a significant and often hidden financial burden—costs linked to specialist diets, prescription foods, reduced ability to work, and the demands of caring responsibilities. On average, disabled households face an additional £1,095 per month in essential costs, yet over 35% of our community are not accessing the financial support they are entitled to, and many have never received tailored guidance on managing money or planning for the future.

Why are we crowdfunding?

This project addresses that gap. We are developing a dedicated financial wellbeing service designed specifically for our rare disease community-equipping individuals and families with practical money management skills, financial confidence, and the tools they need to take greater control of their financial lives and build long-term security.

We are crowdfunding because too many families living with an Inherited Metabolic Disorder are facing financial pressure in silence, without the tailored support they urgently need.

For our community, money worries are not occasional-they are constant. The costs of specialist diets, prescription foods, reduced working hours, and caring responsibilities quickly build up, often leaving families feeling stretched, anxious, and unsure where to turn. On top of this, too many people simply don’t know what financial support they are entitled to, meaning vital help goes unclaimed.

Our research and lived experience tell us the same story again and again: people feel overwhelmed by the complexity of their finances and underprepared for the long-term impact of living with a rare condition. Many have never had access to practical, judgement-free guidance to help them budget, plan ahead, or build even a small sense of financial security.

We already know the difference tailored financial and welfare support can make. One member of our community, who received support through a lengthy benefits appeal process, shared:

"After an extensive wait and facing a refusal after the mandatory appeal, I felt disheartened. However, the guidance I received from Metabolic Support through the tribunal process was instrumental in achieving a successful outcome. The support and encouragement I received throughout this challenging process were invaluable."

Another individual told us:

"Thank you so much for all your help. I wouldn’t have been successful without Metabolic Support's help. I have been awarded the benefits I need and am extremely grateful for all your help."

These stories demonstrate the real impact that specialist guidance can have-helping people access the financial support they are entitled to, reducing stress and uncertainty, and improving their quality of life.

This crowdfunding appeal will change that.

Every pound raised will go directly towards delivering life-changing financial wellbeing support for people living with an Inherited Metabolic Disorder (IMD) and their families.

How we’ll spend the money raised

Here is what your support will make possible:

Money management workshops
We will deliver practical, supportive group sessions designed specifically for people living with rare metabolic conditions. These workshops will cover everyday but essential skills-budgeting, managing fluctuating income and costs, saving where possible, and understanding financial protection-in a way that is clear, accessible, and relevant to real life with a long-term condition.

Plain-language financial resources
We will create easy-to-understand guides and tools tailored to the IMD community. These will break down key topics such as budgeting, planning ahead, and understanding available financial support, removing jargon and making financial information genuinely usable for those who need it most.

Peer-led financial confidence programme
Through our Metabolic Connect peer support network, we will empower people to share lived experience, practical tips, and financial knowledge with one another. This will help reduce isolation, build confidence, and strengthen financial understanding across the community in a supportive, relatable way.

Together, these elements will do more than share information-they will help people feel more secure, more capable, and more in control of their financial future.

How you can help

There are two simple ways to get involved and support our project:

1. Make a donation

Every pledge gets us closer to our goal. Early support can help build momentum and inspire others to give too.

2. Spread the word

Share our project with friends, family and your wider network. The more people we reach, the more likely we are to succeed.

Funding method

Keep what you raise – this project will receive all pledges made by 16th September 2026 at 7:26am