Partnering with Families

We engage families and advocacy support groups in our research to ensure it is relevant and impactful. Families contribute to study design and help shape our patient information sheets and other resources. We regularly attend and present at family conferences, providing updates on our research and engaging directly with families. This ongoing partnership ensures our research addresses real-world needs and benefits the community.

Research Powered by Patients

Our research is powered by patients who ask the questions that drive discovery. One lady, diagnosed with hyperinsulinism in her teens had a family history of hyperinsulinism affecting multiple relatives. She reached out to our team to ask if the condition was likely to be genetic. Her curiosity ignited research that is shaping the future of adult-onset hyperinsulinism.

Contributing to Patient, Family and Caregiver Events

KOHHA-DER Family Conference, Antalya, Turkey, 2026

Oguzhan Kalyon and Sarah Flanagan attended this Kohha-Der Turkish family conference in Antalya. Sarah gave a presentation and both contributed to ask the expert sessions and break-out groups discussions.

Children’s Hyperinsulinism Charity Family Conference, 2025

Sarah Flanagan attended this UK-family based conference virtually where she led a genetics question and answer session for the families.

Congenital Hyperinsulinism International Family Conference, Liverpool, 2024

Five members of the Exeter team travelled to Liverpool to attend this event. Sarah Flanagan presented on the latest research findings from Exeter with the rest of the team supporting the Genetics breakout session where families had an opportunity to ask questions.

Bringing Families Together Conference, The Children’s Hyperinsulinism Charity, Tamworth, UK, 2024

Four members of the Exeter team attended the event. Jayne Houghton and Sarah Flanagan gave a presentation which provided an overview of the genetics of hyperinsulinism and recent research findings, including the discovery of non-coding variants in HK1 that was published in Nature Genetics.

Congenital Hyperinsulinism International Virtual Family Conference, 2020

Sarah Flanagan, Jayne Houghton, and Tom Hewat, attend the online family conference where they took part in as panel member in ‘Ask the Expert’ sessions and lead the genetics breakout group.

Congenital Hyperinsulinism International Family Conference, Vienna, Austria, 2019

Sarah Flanagan joined the family conference in Austria where she gave a presentation and contributed to an ask the experts question and answer session.

Bringing Families Together Conference, The Children’s Hyperinsulinism Charity, Tamworth, UK, 2018

Sarah Flanagan attended the family conference in Staffordshire where she gave a talk on the role of genetics in Congenital Hyperinsulinism and current research opportunities for families.

Congenital Hyperinsulinism Family Conference, Athens, Greece, 2018

Sian Ellard attended the Congenital Hyperinsulinism International family conference held in Athens. She presented some of the work that the Exeter team are doing to unravel the genetics of this condition.

Congenital Hyperinsulinism Family Conference, Philadelphia, USA, 2016

Sian Ellard and Sarah Flanagan attended the family conference held at the Children’s Hospital Philadelphia were they presented on the role of genetics in Congenital Hyperinsulinism and ask the expert session.

Congenital Hyperinsulinism Family Conference, Paris, France, 2016

Sian Ellard presented at the Congenital Hyperinsulinism International family conference held in Paris. She spoke about the role of genetics in Congenital Hyperinsulinism.