Our Awareness Month
Since 2015 August has been deemed Autoinflammatory Awareness Month.
It coincides with the hottest month for many regions and your elected representatives are back in their constituencies so can be lobbied on behalf of #Rare #Autoinflammatory #Diseases. Please do what you can to increase awareness
Jeans for Genes Day
Everyone can take part in Jeans for Genes Day in their community, school or workplace by simply wearing Jeans to work or school for a day during the week Monday 16th – Friday 20th September.
Download your packs and get more information right here.
Equal access to care for rare diseases
Huge strides have been made in developing ways to tackle rare diseases – which the European Union (EU) defines as those affecting fewer than 1 in 2,000 people.
Building a new website
We are now in the position to create an all new website. We hope this site will become a resource not only for our community but for the wider #RareDisease community and people looking for more information on their symptoms where answers are vague for and from the medical community.