Get Involved

The BHD Foundation (Charity Number: 1122073-1) is a charity and as such receives no government funding to run its operations. We rely solely on donations made by members of the public and organisations.

Funds raised by the public for the BHD Foundation are earmarked for projects impacting the communities we serve and enable us to provide the support, education and advocacy that is so important. Through our parent organisation the Myrovlytis Trust (Charity Number: 1122073), we fund vital research directed towards new therapies and eventually a cure for Birt-Hogg-Dubé syndrome.

Join us as we raise awareness, provide support and move the field forward together.

Help us fund a new website

We are raising funds to develop a new BHD Foundation website to better support the BHD community.  Our current website was created some time ago and is in desperate need of updating. The new website will be optimised for use on mobile phones and tablets and will better meet the needs of patients and families. We are working with our Patient Advisory Board who will be involved in content development, design and user testing throughout.

To donate to this project via paypal, please click here.

We would love members of the community to get involved with raising funds for the BHD Foundation. Here are some of the ways that you can help.

BHD Foundation Website Prize Draw

We held a BHD Foundation Website Prize Draw which opened on 08 October 2022 and ran through to 30 November 2022.

A massive thank you to everyone who entered and kindly made donations to this draw!


Are you an avid walker, lover of baking or always wondered what it would be like to trim those lovely locks off in the name of a good cause? Then we would love you to get involved with supporting the BHD Foundation.

Fundraising is a great way to not only support us, but also to have some fun and push yourself out of your normal boundaries.

Check out our Fundraising Ideas document below, detailing ways to get involved.

Let us know if you plan a fundraising event and we will support and promote you in as many ways as we can.



Donations of any amount from any cause can be made by clicking on the button below.

The Myrovlytis Trust and BHD Foundation support people across the world. We are based in the United Kingdom and as such, any UK tax paying citizen can help us a little bit more (without any cost) by declaring Gift Aid. Please tick the Gift Aid box when donating through PayPal if you would like to donate with Gift Aid.


Facebook fundraising campaigns are a fantastic way to raise awareness of BHD and involve your friends and family in a cause close to your heart.

You can start up your own fundraising campaign on Facebook, or you can hold a birthday fundraiser and ask friends and family to donate funds for you birthday.

Click here to start your Facebook fundraising campaign!



It is never easy to think of what happens next. You might be at a stage where you have decided that leaving a legacy to a charity is what is best for you. A legacy is there to ensure that your money is put to a good cause when you are no longer here. It is your way of helping the next generation of people with BHD, some of whom may be your own family members. If you are considering the BHD Foundation as part of your legacy and would like to speak to a member of the team about the next steps please email us at and we will discuss the options available to you.

Gift In Kind

We can also accept Gifts in Kind. These gifts can be used in prize draws or auctions to help us raise funds and are always gratefully received. If you would like to donate to us, or discuss becoming a corporate donor, please email us at