A lifeline for our community. Help us raise funds

It is with great sadness that we announce the passing of our founder and Chair of Trustees, Dimitris. This is a major loss to the BHD community and has an impact on the future of operations. As sole funder of the Trust, we have received our funding from Dimitris since the beginning and are unable to access Dimitris’s funds to continue the Trust as it is from April 2025.

The Patient Advisory Board setup by the Myrovlytis Trust will continue to operate as a group outside of the Trust with voluntary support from Katie Honeywood, CEO of the Myrovlytis Trust, and the wider research and clinical community such as members of the current Science Advisory Board group.

This group have appointed a specialist to assist in setting up a not for profit charity in the US to continue supporting the BHD Foundation in the future. Members of this group are offering to put their personal finances into continuing the website and registry for a further year.

The BHD Foundation website has been purchased as part of the liquidation process by this group and is in place until end of November 2025. It has no links to the Myrovlytis Trust or current BHD Foundation which will cease to exist and will be closed by the Charity Commission.

The website will be managed by Katie Honeywood outside of the Myrovlytis Trust in a voluntary capacity until such time that the US charity has been established. This will allow both new and current patients to have access to information relating to BHD.

The patient group are hopeful to be able to raise funds through the community to continue to provide this service past the November date and far into the future.

The BHD Patient Registry is owned by Pulse Infoframe. The reason for this is to ensure data is confidential and no personal information such as names, addresses etc are passed on to anyone outside of the database owners including Trust staff. This data will remain on the registry for now and again we will be fundraising to continue to provide this resource so it can be used in the future as a research project where it will be evaluated looking for commonalities in symptoms not formally associated with BHD.

All social media accounts will continue as it is. The BHD Foundation Facebook page will act as the communicator for updates on the future of the BHD Foundation. If you have not signed up to this page, you can do so by visiting www.facebook.com/birthoggdube

The contact@bhdfoundation.org and contact@myrovlytistrust.org email addresses will no longer be available as of 04 July 2025. This is under review until a new charity has been established. Messages can continue to be sent via the Facebook page messenger.

Preserve the BHD Foundation — a lifeline for thousands of patients around the world by donating through the patient led group

Despite our sadness for the passing of Dimitris, and the consequent closure of our organisation, we are very pleased to be able to share that a group of patients has committed to continue the work of the foundation.  We have been wholeheartedly supporting their efforts with our time and our resources.  They are now in need of your financial support to preserve our work.

Please donate if you can to their Gofundme campaign.  Learn more here Go Fund Me page.