Today is the Day of Giving, a day when people come together to support a cause or community. We are developing a BHD patient registry which is a centralised database that collects information about people with BHD. They are particularly useful in the context of rare diseases as they help researchers and clinicians to build a more complete picture of the condition.
View our infographic to find out more. The infographic includes information about our September meeting which has now taken place however there are still ways you can get involved and support the development of the registry.
Ways to help:
1. Select Myrovlytis Trust on Amazon Smile. We have joined forces with Amazon Smile. Select Myrovlytis Trust as your charity and for each purchase, you make through Amazon Smile, Amazon will donate 0.5% to us.
2. Make a donation through PayPal. Select your charity as the Myrovlytis Trust or use our charity number 1122073 and donate.
3. Sign up for our newsletter to keep up to date with the progress of the registry and associated volunteering opportunities.
4. Share a fundraising idea with us and we can work together to make it a reality. Email us at firstname.lastname@example.org
5. Share your time and expertise. Do you have a skill in design, translation or other? We would love to know and will get in contact with volunteering opportunities that match your skill. Email us at email@example.com
We want to send out a massive thank you to the BHD community for all your support since the relaunch of BHD Foundation this year.