Tea and cake will be served at The Laboratory, Bethnal Green between 3- 5pm on Sunday 3 March. Everyone is welcome at this informal event, whether you are friends, family, locals, or people who have experience of a super rare condition.

RSVP

Please RSVP to longhurstjo@icloud.com so we can make sure we have enough refreshments. We will send you details of how to find us.

Donate

Please make a donation on this page to support people living with Super Rare bone marrow related conditions. Every donation, however small, makes a difference.

How DC Action are planning to help people affected by dyskeratosis congenita this year;

-Provide expert emotional well-being support, designed and delivered by qualified psychologists

-Help members of our community to access benefits and insurance

-Publish new up-to-date information resources to help people understand the condition, current research and treatment

-Facilitate improved opportunities for peer-to-peer support

-Raise awareness and help you to explain the condition to clinicians, teachers, employers, and the public.