Rare disease day takes place on the 28th of February every year. This year the theme is health equity. People with rare diseases are more likely to experience treatment inequality, misdiagnosis and isolation compared with other more common health conditions. This needs to change.

We will be actively involved in Rare Disease Day and would love for you to join us.

There are many different ways to get involved, from being part of our BHD Blog to lighting up your house. Below we have included several ways that you can get involved.
 
Be part of our Rare Disease Day blog and raise awareness of delayed diagnosis.

This Rare Disease Day we are talking about health equity and challenging doctors to think rare. We are putting together a blog post about the challenges people have had to overcome to be diagnosed with BHD.

You can add your voice to the blog by letting us know.

• How long did it take you to be diagnosed with BHD?
• What challenges did you face when being diagnosed?
• What advice would you give to people who think they may have BHD?

The answers will be anonymously included in the blog to highlight to clinicians the challenges people with BHD face and why it’s so important to think BHD.
 
If you would like to get involved please complete this short anonymous survey.
 
Attend an event.   

Find an event in your area by visiting the Rare Disease Day website.

• Attend the NIH Rare Disease Day.
• Attend the virtual FDA Rare Disease Day public meeting.

Spread the word on social media.

Rare Disease Day have a social toolkit and downloadable resources.

Don’t forget to tag us on Twitter @BHD_Foundation or Facebook @birthoggdube so we can share your posts.

Fundraise for BHD

You can also fundraise for the BHD Foundation. We greatly appreciate any donations. All the money raised on Rare Disease Day will go towards the new BHD website that will launch later this year. The aim of the new website is to better support the BHD community. Visit our Fundraising page to find out more. 

Share your colours

• Take part in Global Chain of Lights.   

You can also let us know if you have any ideas for rare disease day and we can help make it happen!

Together we will show our colours on Rare Disease Day and challenge doctors to think BHD.