Our Network
Networking is an invaluable way to align with organisations that share our values and help us to improve the support we offer to individuals with Hyperinsulinism and their families. It also provides us with exciting opportunities to join in advocacy projects and support initiatives that help the wider rare disease population.
We are currently members or partner with:
Box4Kids
Box4Kids invites seriously ill children to enjoy sporting and entertainment events from the comfort of executive boxes. The boxes provide a safe and relaxing environment for children and most importantly the opportunity to be treated like a VIP for the day. These much-deserved experiences provide quality time for each child and their guest, away from the day-to-day challenges they face with their illnesses.
https://barriewellstrust.org/box4kids/
Medic Alert
When you can’t speak, we can. Quick access to your vital medical details in an emergency, where every second counts.
Sunflower Scheme
A simple tool for you to share that you have a hidden disability voluntarily. Simply by wearing the Sunflower, you’re just letting everyone know that you might need extra help, understanding, or just more time.
Stickman Communications
The home of differently normal. A refreshingly, stylish, light-hearted yet true-to-life approach to disability.
Using stickmen and clear, to the point descriptions and instructions to break down barriers, challenge preconceptions, promote understanding and acceptance, and facilitate communication.
Nurse Dotty Books
Nurse Dotty books aim to alleviate anxiety around being admitted to hospital for children and their families through giving truthful information in a reassuring and friendly manner.
They are packed with pictures and references to equipment and procedures presented through a rhyming story with cartoon illustrations. This helps to, in a child friendly manner, introduce and explain some of the experiences they will have during theirs or a family member’s hospital admission.
Genetic Alliance UK
An alliance of over 200 charities and support groups working together to improve the lives of people in the UK with genetic, rare, and undiagnosed conditions.
Cambridge Rare Disease Network
Cambridge Rare Disease Network is a platform for change. It is the infrastructure that unites patients, advocates, experts and leaders to address the challenges faced by people affected by rare diseases.
By sharing knowledge and experience, and working together, the journey towards better diagnosis, treatment and support for patients and their families is smoother and more certain. Building supportive communities.
We are pleased to have partnered with CamRARE to bring ‘This Is Me’ Patient Passports and to be supporting Patient Led Research
Medics4Rare Diseases
Medics4RareDiseases is a registered charity driving an attitude change towards rare diseases amongst medical students and doctors in training.
Genomics England
We partner with the NHS to provide whole genome sequencing diagnostics. We also equip researchers to find the causes of disease and develop new treatments – with patients and participants at the heart of it all.
Neighbourly
Neighbourly is an award-winning giving platform that helps businesses make a positive impact in their communities by donating volunteer time, money and surplus products to local good causes.
Visit The Children’s Hyperinsulinism Charity on Neighbourly here https://www.neighbourly.com/CHCharityUK
Disabled Children’s Partnership
A major coalition of more than 100 organisations, supported by a network of thousands of parent carers and allies, who campaign for improved health and social care for disabled children, young people and their families.
Breaking Down Barriers
We are a network of over 60 organisations working together to improve the lives of families from diverse and marginalised communities, who are affected by genetic conditions, so they have equal access to health services.
There is no such thing as hard to reach communities, only services and organisations that can be difficult for people from diverse communities to access.
EURORDIS
Rare Diseases Europe is a unique, non-profit alliance of over 1000 rare disease patient organisations from 74 countries that work together to improve the lives of over 300 million people living with a rare disease globally.
By connecting patients, families and patient groups, as well as by bringing together all stakeholders and mobilising the rare disease community, EURORDIS strengthens the patient voice and shapes research, policies and patient services.
Contact Charity
We exist to help families feel valued supported, confident and informed.
Contact Charity https://contact.org.uk
Medscape – Details coming soon!!
Gene People
We are proud to be members of The Gene People Partnership Network. An exciting collaboration between organisations working to improve the lives of those affected by genetic conditions. The aim of the Partnership Network is to to form and develop a positive collaborative relationship and to work together to raise awareness to support those living with genetic conditions. https://genepeople.org.uk/
If you would like to network with us please email enquiries@hyperinsulinism.co.uk
Hyperinsulinism Network
Hyperinsulinism Teams:
Great Ormond Street Hospital:
https://www.gosh.nhs.uk/conditions-and-treatments/conditions-we-treat/hyperinsulinism/
Royal Manchester Children’s Hospital
https://mft.nhs.uk/rmch/services/rmch-endocrinology/
Alder Hey Children’s Hospital
https://www.alderhey.nhs.uk/conditions/patient-information-leaflets/congenital-hyperinsulinism-chi/
Royal Hospital for Children Glasgow
Royal Belfast Hospital for Sick Children
Children’s Health Ireland – Temple Street – Dublin
Hyperinsulinism Organisations and Patient Groups around the World
Congenital Hyperinsulinism International:
https://congenitalhi.org/
Hiperinsulinismo Congénito (Spain)
https://hiperinsulinismocongenito.org/
Kongenitaler Hyperinsulinismus e.V. (Germany) https://hyperinsulinismus.de/
Vivere con C.H.I. (Italy)
https://www.iperinsulinismo.org/
Lobby4Kids (Austria)
https://lobby4kids.at//
Congenital Hyperinsulinism India Association:
https://www.hyperinsulinism-india.org/home
Hippo House:
https://www.thehippohouse.org/en/
Diabetes
Children with Diabetes:
www.childrenwithdiabetesuk.org
UCLH (University College London Hospital)
www.uclh.nhs.uk/OurServices/ServiceA-Z/CYPS/PDIAB/Pages/Home.aspx
Diabetes UK:
www.diabetes.org.uk
JDRF:
www.jdrf.org.uk
National Paediatric Diabetes Network:
www.cypdiabetesnetwork.nhs.uk
Publications
Standardised practices in the networked management of congenital hyperinsulinism: a UK national collaborative consensus
https://www.frontiersin.org/articles/10.3389/fendo.2023.1231043/full
Paediatric Society and Hyperinsulinism Charity National Surveys on CGM Access for Patients With Recurrent Hypoglycaemia
https://academic.oup.com/jes/article/7/4/bvad021/7008973
Accuracy and impact on quality of life of real-time continuous glucose monitoring in children with hyperinsulinaemic hypoglycaemia
https://www.frontiersin.org/articles/10.3389/fendo.2023.1265076/full