Patient Engagement
Within the Wellcome Centre for Mitochondrial Research we put patients first and ensure they are at the heart of all that we do. One of the things we value most is our continued relationship with our patients and their supporters and we believe strongly that the whole field will only move forward by us working together. In addition to our research strategy we are very committed to keeping patients and their families fully informed of new advances in mitochondrial research and explaining the complexities of mitochondrial disease.
Lily Family Day
Patients with mitochondrial disease, along with their families, came together at the Lily family day’s in 2014 and 2015 for a weekend of family fun and interactive seminars. We were very pleased to be part of these fantastic weekends. They provided unique opportunities for patients, clinicians and scientists to interact. Representatives from the Centre highlighted and discussed some of the research happening within the Wellcome Trust Centre for Mitochondrial Research and had direct feedback from patients as a result.
NIHR OK to ask Campaign
The NIHR ‘Ok to ask’ campaign aims to encourage patients or carers to ask about research opportunities that could be available to them or their families. We took part in this campaign by holding a stall outside of the Medicinema within the The Great North Children’s Hospital. It gave members of the public an informal opportunity to chat to some of our researchers and ask questions about our research.
Great North Children’s Hospital Event
A team of representatives from the Wellcome Trust Centre for Mitochondrial Research ran a stall at the Great North Children Hospital’s 5th Birthday party where patients, carers and staff could play fairground style games based around mitochondrial genetics. The bean bag respiratory chain game proved popular with patients, with celebrity chefs and the odd storm trooper also taking part. It was a great day thoroughly enjoyed by all who attended as well as the Wellcome Trust Centre for Mitochondrial Research staff.
Patient Days
Annually we invite over 100 of our patients to attend a patient day in Newcastle. The days offer a unique opportunity for patients and carers to hear about the research performed within our Centre and to pose questions directly to the researchers involved. The patient day also provides an opportunity for patients to interact informally with each other and with our scientists.
Mitochondrial Donation
The Wellcome Trust Centre for Mitochondrial Research, has been developing new IVF techniques which may potentially prevent women affected by mitochondrial DNA disease passing the condition on to their future children. Thanks to our patients help, hard work and support on the 3rd of February 2015 the House of Commons voted 382 to 128 to allow mitochondrial donation.
Mitochondrial Research Matters
Patients, their relatives and carers from the North East Region were invited to celebrate their involvement in mitochondrial research at an event organised by our Senior Research Nurse Alex Bright. We showcased some of the most recent clinical research conducted by our team.
Mitonews
Our research and patient newsletter.