Driving research, providing support and improving outcomes for patients and their families affected by rare conditions



Symposium 

 

Our 2024 BHD Community Symposium is being held online on Saturday 12 October 2024 from 3.00 pm – 8.00 pm BST.

This year’s symposium is focussed on the patient community. The agenda is being set by the patients following feedback from a patient survey. Patients and family members will be able to learn more about BHD from clinicians and patients who have lived experience.

There is a focus on the mental health aspect of living with a rare disease and the impact this has on a patient and their own community.

We will be providing an update on currently funded research by the Myrovlytis Trust direct from the researchers.

Patients and family members will also have the opportunity to talk to one another and specialists about BHD.

An agenda for this event will be published in the coming weeks.

A big thank you to our BHD Patient Advisory Board for their support along with all those who have provided feedback on what they would like this year’s event to include. We have listened to you and are working on an agenda.

Visit https://bhds2024.eventbrite.co.uk to register for your free space.

We look forward to seeing you at the event. Please drop us a line at contact@myrovlytistrust.org with any questions.

Partnerships

Memberships

Osteosarcoma Institute
Bardo Foundation
Rare Revolution Magazine
Gene People logo
Gene People logo
Sarcoma Patient advocacy Global Network

Connect with us…

Back to top