How WE can help YOU
Although the Mitrofanoff is a relatively rare procedure, we have over 800 members and more than 2,900 registered users in our ‘closed’ Facebook group.
As well as information and direct support, the Charity provides opportunities for people to link up with others. We welcome anyone with a connection to the Mitrofanoff procedure to join our Patient Education Days and Mitrofanoff Online Networking Sessions (see below). The closed Facebook group enables members to share their experiences with people who empathise and offer help to each other.
If you would prefer to talk to someone, we have a number of volunteer ‘buddies’ who would be happy to chat about living with a Mitrofanoff, or if you would like to meet someone in your area, we will endeavour to put you in touch. Please email info@mitrofanoffsupport.org.uk.
Mitrofanoff Support Days, previously Patient Education Days
Our Mitrofanoff Support Days (MSDs) provide an opportunity to meet and interact with our medical team, sponsors and people with a Mitrofanoff (“Mitrofanoffers”). Attendees will be able to listen to presentations from our medical experts and ask them questions, hear stories from patients and talk with medical suppliers. These events are also an excellent chance for informal networking and conversations with other people in a similar situation.
We hold two Mitrofanoff Support Days (MSDs) each year and try to reach as many people as possible across the country. One in the north during spring and London in Autumn/Winter. See our social media feeds for further details or email info@mitrofanoffsupport.org.uk
Feedback from previous MSDs:
"It was excellent - grateful for all the clinical staff speaking. A good range of ages."
"Had a fantastic day and found it really beneficial. Will definitely be at the next one!"
"It is always good to meet together and share stories. Thank you for all you do at the charity to support us all."
Mitrofanoff Online Networking Sessions (MONS)
These online sessions started in 2020, when we were unable to hold the Mitrofanoff Support Days due to COVID-19. We have tried to recreate the feel of the MSDs, with participants able to share their experiences and put questions to our medical team and trustees. We also offer some sessions with representatives from our sponsors who can provide advice about specialist medical supplies.
Before the sessions, attendees may wish to watch our video below which features brief talks from our Patron, Dan Wood (Consultant in Adolescent and Reconstructive Urology, UCLH) and our Nurse Adviser Sharon Fillingham (Urinary Diversion CPF/Psychosexual Therapists, UCLH).
Details of the next MONS will be published shortly before the event, but if you would like to know the date of the next MONS, please email info@mitrofanoffsupport.org.uk.