How WE can help YOU
Although the Mitrofanoff is a relatively rare procedure, we have over 800 members and more than 2,200 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 firstname.lastname@example.org.
Patient Education Days
Our Patient Education Days (PEDs) 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 usually hold two Patient Education Days (PEDs) each year and try to reach as many people as possible across the country. Our last event was held in Birmingham on Saturday 28 September 2019, as we were unable to hold these events in 2020 due to the coronavirus pandemic. We hope to hold one in September 2021 in London and will provide an update when we are able to confirm the date and venue.
Feedback from previous PEDs:
"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 Patient Education Days due to COVID-19. We have tried to recreate the feel of the PEDs, 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 email@example.com.