A couple of weeks ago, Team Metabolic’s Young Person’s Project Officer, Sally, got the opportunity to go to Vienna to attend Summer Training for Young Patient Advocates led by the European Patients’ Forum, to learn more about how young people can be the best patient advocates for their condition and how we can ensure their voices are heard in the important decisions facing them – a topic very close to our hearts. Here, Sally, explains a bit more about her experience at this incredible course in Vienna and how it will shape our young people’s support programme, NextGen.
Why did you go to Vienna?
I was lucky enough to get a place on the Summer Training for Young Patient Advocates, which was created by the European Patients’ Forum (EPF), an umbrella organisation that works with patient groups in public health and health advocacy across Europe. This is the third year that they’ve run the summer school, as part of their ambition to increase the voice and influence of young people in European healthcare and decision-making, by developing the skills and knowledge of young patient advocates.
What did you do at the training and how did it help?
This year’s theme was ethics, and the training was designed to get us thinking about what it means to be an advocate and to represent others; how we can grow in our work; and the ethical questions we might face – topics that are so important to our NextGen programme. The agenda was really dynamic – there were some presentations but a lot of workshops, discussions and collaboration.
The sessions were also kick-started by talks from expert speakers, including the EPF President, Marco Greco, a Patient Engagement Specialist from the European Medicines Agency and a leading advocate for HIV positive patients. They all shared their own insights, tips and experiences, and took time to answer our questions.
Did you meet other patient advocates with Inherited Metabolic Disorders?
I didn’t! But that meant it was a great opportunity to raise the profile of these disorders with other people working with rare diseases, who hadn’t heard about Inherited Metabolic Disorders before. The attendees represented a wide range of chronic disorders and came from all over Europe. They were mainly patients, but some were non-patients working as advocates or involved in healthcare. So, it was fascinating to hear where everyone had come from and why they do the work they do.
What was the best thing about the training?
This is the best training I’ve ever experienced (and I’ve done my fair share)! But that wasn’t just because of the quality of the information but the way in which the whole time was organised, to allow us to really open up; get creative; and connect with each other. For me, and for everyone there (I think!), the highlight of the training was the relationships we were able to form in such a short space of time and how much we were able to learn from each other.
We were in a perfect setting in a small hotel surrounded by parkland and just outside the city centre near the famous Schönbrunn Palace. There was time set aside for us to just hang out over food and share our stories. On the last day, we were given some time to go away and reflect on our own and then to come back together and share what we were thinking and feeling before we left Vienna, and it turned out be a really emotional afternoon!
From everything you learnt at the training, how can young people be the best patient advocates for their condition?
That’s a big question! We were given a lot of words of wisdom during the course, which I’m not sure I could do justice to here, but I’d say to any young people affected by a rare disease that your story and voice matters. If there are things you care about and want to change, now is the time for young patients to be heard; and people are starting to listen. I’d encourage anyone to find out how they can do more, such as signing up to our NextGen programme; reaching out to a patient community on social media; or learning more about groups like the EPF.
Thank you to Sally for sharing your experience at the Summer Training for Young Patient Advocates and how each young person can become the best advocate for their condition.
To learn more about our young people’s programme, NextGen, please see the following link: https://www.metabolicsupportuk.org/young-people/ , or contact Sally on sally@metabolicsupportuk.org or 0845 241 2173.
Musgrove Park Hospital in Somerset to Guys St Thomas’ Hospital in London by the Children Acute Transport Service (CATS) team. It was a very distressing time for the whole family and we were told to prepare ourselves for the worst, as they honestly didn’t think Tayla was going to pull through. We were there for 3 weeks until one doctor came on duty and ran some tests for a Urea Cycle Disorder, and that’s when we were given the news that she had 
Tayla even decided she wanted to go as the word medication for World Book Day, so she could show all her friends exactly what she needs to keep her liver working properly.”
community in their local areas, enabling us to reach many more patients and families. They are also helping us spread the word by raising awareness and fundraising.
Our 
marathon runners and their commitment to train, run and fundraise in support of Metabolic Support UK, whatever the weather!
“There’s no doubt, I was born to be a runner. I enjoy it. I like the thrill of getting out with the dogs in the crisp winter air, feeling invigorated as I pilot new running routes around the Cotswolds. The only thing, which really frustrates me, is when my Garmin has no signal, causing me to jump frantically up and down like a frog on a lily pad, so I don’t lose momentum. Yes, admittedly, I am now one of those people, who I used to look at and despise. This was usually from the confines of a pub, watching the vibrant streak of lyrca whizz pass the window
marathon runners and their commitment to train, run and fundraise in support of Metabolic Support UK, whatever the weather!
Who 
of London for the London Marathon! We are always in awe of our incredible marathon runners and their commitment to train, run and fundraise in support of Metabolic Support UK, whatever the weather!
community together to fundraise for Metabolic Support UK and to celebrate the life of Anna, their daughter, who very sadly died of GM1 Gangliosidosis, aged 1. They organised a classical concert music, which proved to be a huge success, as Sarah, Anna’s Mum, explains.
The concert was a rip-roaring success both from the turnout and from the feedback given on the night and since the concert. With family and friends spread far and wide, we knew not all would be able to come. So, alongside the concert, we also ran a Just Giving page to provide an opportunity for some of them to contribute. This was a brilliant idea! We raised £660 through our Just Giving page alone! With the money raised on the night and other donations received, we have raised a staggering £3,018.22! As a family, we couldn’t be prouder of this achievement and all for a cause so close to our hearts.
5. Do you have a favourite running route?
of London for the London Marathon! We are always in awe of our incredible London Marathon runners and their commitment to train, run and fundraise in support of Metabolic Support UK, whatever the weather!
We hope your training continues to go well Mike!
2. Raise Awareness
Connecting People
