Together for Birt-Hogg-Dubé: Patient-Led, Community-Powered

Help us raise $20,000 to preserve a lifeline for thousands of patients around the world

The Foundation has helped families with a rare genetic condition, that among other things leads to kidney cancer and lung collapses. It has been a critical lifeline for patients and families — providing accurate information, maintaining a unique patient registry database, promoting and supporting education and research, and giving a voice to our global community.

But we are now at a turning point.

Following the passing of its donor, the BHD Foundation has to close.

I am part of a group of patients and advocates stepping up to keep the work going. We are creating a new patient-led nonprofit that will carry on its mission. And we urgently need your support with funding to cover critical costs during this transition:

What Your Donation Will Support:

1. Maintaining the website: The world’s most trusted source for BHD information

2. Hosting and protecting the patient registry, the key global information source for research on our condition

3. Setting up a U.S. charity to expand awareness, education, fundraising, and grants

4. Continuing support and education for patients, families and medical professionals, so we all learn from the best research around the world

We have been working closely with the existing staff of the BHD foundation. And we need to raise $20,000 in the next few weeks to ensure nothing is lost during this handover. Every donation — large or small — makes a difference.

How You Can Help:

Donate what you can — even $20 helps us move forward

Share this page with your family and friends and others in the community or in the rare disease space

Tell your story here and elsewhere — let others know how the BHD Foundation has helped you

Let us know if you have time to engage in building our leadership team. We especially need expertise in fundraising, social media, website management, financial management, political advocacy, and on-line event creation

The BHD Foundation has helped so many of us feel less alone. Let’s make sure we keep doing that for years to come.

With gratitude,

The BHD Patient Leadership Team

Barnaby Grist (Nevada and Spain)

Dr Phil Hart (Ohio)

Katie Honeywood, Former CEO of Birt Hogg Dube Foundation, UK

Elizabeth Jacoby (Ohio)

Scott McKibbin (Washington DC)

Katrinka Ruk (California)