Metabolic Support

27/08/2026

With only a few weeks left of our Aviva Crowdfund, there isn’t much time left to help us reach our goal - and right now, your donation can go twice as far.

Thanks to Aviva’s match funding, every donation is matched up to £250, doubling the impact of your kindness.

We’re raising funds to help our community to access the financial support they need and deserve, including:

💷 Money management workshops
📚 Plain-language financial resources
🤝 A peer-led financial confidence programme
🧭 Guidance through benefits and financial planning

Our goal is simple: to help families feel more secure, more confident and more in control of their financial future — so they can focus on living, not simply surviving.

Please donate today and help us raise the funds needed to make a real difference to families facing the financial challenges that can come with a rare diagnosis.

Click here to donate 👇
https://communitiesfund.avivafoundation.org.uk/p/qr/6Wk7MbaW?utm_campaign=sharemodal&utm_medium=referral&utm_source=shortlink

Thank you! 💜

18/08/2026

The figures speak for themselves. 💜

Benefits and money management are among the top 3 most-accessed areas of our website.

This tells us something important: financial support is a real and growing need within our community.

We want everyone affected by metabolic conditions to feel supported, with access to the information, guidance and tools they need to manage their finances and reduce the worry that money can bring.

Help us make that possible.

Please share this post and, if you can, donate today. Every donation up to £250 will be matched by Aviva, meaning your donation can go twice as far. 🙌

Your support could help someone feel a little less worried, a little more supported, and better equipped to manage the financial challenges they face.

Donate today. Share today. Help us make every pound go further.

https://communitiesfund.avivafoundation.org.uk/p/qr/6Wk7MbaW?utm_campaign=sharemodal&utm_medium=referral&utm_source=shortlink

14/08/2026

Venue confirmed! 📍

Sarah, our Community Lead, is visiting Dublin on Saturday 22nd August to hear your experiences of living with, or caring for someone with, an IMD in Ireland.

Please pop by and meet Sarah and the All Ireland Rare Disease Interdisciplinary Research Network to share your views and hear more about how we can support you.

Time: 10:00–12:00

Venue: Marlin Hotel Dublin, 11 Bow Lane East, St. Stephen’s Green - sofa area of the bar.

Any questions, feel free to email Sarah: [email protected]

13/08/2026

Every day, parents are forced to make impossible choices between being at their child’s hospital bedside and earning a living.

This consultation is your chance to help change that.

The Government consultation on paid leave for parents of seriously ill children is now open - and your voice could help change lives.

If you’ve lived this reality, supported a family through it, or simply believe families deserve better, please take a few minutes to respond.

The website includes guidance on which questions to answer and suggestions to help with your responses, making it a little easier to take part.

Your voice matters. Your story matters. Together, we can create real change.

✍️ Please respond. Please share. Help us make sure families are heard.

The consultation is open until 1st September.

Find out more and have your say: www.hughslaw.uk

12/08/2026

🎥 Watch our crowdfunding video to hear why we’re raising money.

Our CEO, Kirsty, explains the financial struggles our community faces - and honestly, this shouldn’t be happening.

That’s why we’re developing financial wellbeing services, providing practical tools, financial confidence and support to help build long-term security.

We’re crowdfunding to make this vital support a reality. 💜

Every pound donated will be matched, up to £250! 🙌

Please share our project and donate if you can. Every bit of support makes a difference.

https://communitiesfund.avivafoundation.org.uk/p/qr/6Wk7MbaW?utm_campaign=sharemodal&utm_medium=referral&utm_source=shortlink

10/08/2026

A huge thank you to all our amazing supporters who raise free donations for Metabolic Support through easyfundraising!

If you haven’t signed up yet, why not join today? You can raise free donations for us every time you shop online this summer - at no extra cost to you!

There are hundreds of retailers taking part, including TUI, John Lewis & Partners, Argos, Just Eat and many more. 🙌

✨Sign up today and help us get the chance to win a HUGE £5,000 donation!

Every little bit makes a difference. Thank you for supporting Metabolic Support.

Sign up to support Metabolic Support 💜https://join.easyfundraising.org.uk/msuk/oikpwn/c2s/ZdU7Z020/CE955/textcopy/

Help us when you shop with 8,000+ brands. Join now.

06/08/2026

Calling our Irish IMD community! 🇮🇪

Sarah, our Community Lead, is visiting Dublin on Saturday 22nd August to hear your experiences of living with, or caring for someone with, an IMD in Ireland.

Please pop by and meet Sarah and RAiN to share your views and hear more about how we can support you.
Time: 10:00–12:30

Venue: Central Dublin, Temple area — full details to follow shortly
Any questions, feel free to email Sarah: [email protected]

05/08/2026

The full first-day agenda for our 2026 Community Conference is officially LIVE on our website!

From interactive Topic Tables and expert panel discussions to low-protein cooking demos with Chef Derek, we’ve packed Saturday 14th November with valuable sessions designed to connect, support, and empower everyone living with an inherited metabolic disorder (IMD).

Here is a glimpse of what to expect in person at The Studio, Birmingham:

☕ Topic Tables (10:30 - 12:00): Dive into discussions covering The Cost of Rare & Your Rights, Travelling with an IMD, Transition, Carers Corner, and Research Ready.

🍳 Low Protein Demo (12:00 - 12:45): Get fresh recipe ideas and tips live with Chef Derek!

💬 Kids Talk Back! & Young Adult Sessions (13:30 - 14:30): Inspiring, real conversations led by the younger voices in our community.

💡 Access to Treatments (13:45 - 14:30): Learn how treatments are developed, commissioned by the NHS, and what’s in the pipeline.

🩺 The Knowledge Exchange (14:45 - 15:45): Ask our panel of Consultants, Dietitians, CNSs, and Clinical Psychologists anything.

Head over to our website to check out the full schedule and plan your day!

👉 Book your FREE tickets here: https://www.eventbrite.co.uk/e/metabolic-supports-2026-annual-community-conference-tickets-1982670615182?aff=erelexpmlt

A huge thank you to our sponsors for making this event possible. Sponsor logos can be viewed at the bottom of our Eventbrite page.

04/08/2026

⏰ Last chance to complete our 2026 Community Survey!

Don't miss the opportunity to raise your voice on the issues that matter to you. Big thanks to all who have already responded!

🗓️ Deadline: 15 August 2026

👉 Take the survey: https://www.surveymonkey.com/r/S293ZBG

04/08/2026

We’re crowdfunding because no family living with an Inherited Metabolic Disorder should have to struggle in silence.

For many families, the financial impact is constant. The cost of specialist diets, prescription foods, reduced working hours, and caring responsibilities can quickly become overwhelming, leaving families under immense pressure.

Too many people also miss out on financial support simply because they don’t know what they’re entitled to. We want to change that by helping families access the support they need, when they need it most.

Together, we can make sure no one has to face these challenges alone.

Please share our project!

https://buff.ly/nBka9PV