Individual support

It’s my role to offer practical and emotional support to families and those living with IMDs. It’s wonderful to stay in touch too and hear how people are getting along! Within my role, I oversee our Patient Communities programme and bring people together for peer support.

It is a privilege to be in this position and I have a passionate interest in listening to and understanding each individual journey so we can gain an important picture of how IMDs impact day-to-day lives and identify where change or further support and advocacy work may be required.

We tailor all our advice to individual need, so whether you or your child has been given a new diagnosis or whether you’ve had an inherited metabolic disorder for some time we’ll have something to suit you. Everything is delivered at your pace, we’ll never look to overwhelm you with information and we’re here if you just need to chat through things. There is no such thing as a silly question either, if it’s going to help you in any way then we’re more than happy to answer as many questions as we can.  

We’re also really well connected. We may seem a small team, but we are mighty. We have great connections; working with thousands of families from all over the world, linked with all the metabolic centres in the UK and have international reach too, we work alongside some amazing peer organisations, and we sit on many panels feeding into the diagnosis, care, and management of IMDs…. So, if we can’t answer your query we may well know someone who can!  

As we say to everyone, if you’ve got any questions, if you just need a listening ear, or if you’re simply exploring what support or resources are out there then never hesitate to get in touch!  

Need support? Click the button below to find our contact details.

Individual Support doesn’t just stop at enquiries. You can learn more about the work we do here: 

As patient organisations we are guided by you. You are the reason we exist, and you are at the heart of everything we do. And therefore, your voice is important. Individually, everyone has different experiences, insights, stories, and feelings and emotions too. Everyone’s got different levels of understanding, confidence, abilities, cultures, backgrounds.  

As well as providing tailored individual support, we’ve also got to capture your individual experiences. We’re in these wonderfully unique positions where we can use these to drive conversations, develop new resources, contribute knowledge to decision making processes and facilitate change through our policy work. We capture these experiences through surveys and questionnaires, focus groups, research projects, and events. However, it’s not just form filling and structured questions that we gather knowledge through, It’s also through conversations with every one of you. 

Everything you share with us contributes to our knowledge and understanding so regardless of how much knowledge you think you may or may not have or if you question how relevant it is, if the opportunity arises, please always share your experiences, your thoughts, and your ideas. We are rare, and so every individual’s experience matters, more so because there are smaller numbers.   You are one person, part of a wider community, contributing to ever growing knowledge which would be impossible to achieve without you. And let’s be clear too that the responsibility does not just lie with you, it lies with us to engage with you too and most importantly to listen.