Month: August 2019

Canakinumab Ilaris

NHS Consultation on Canakinumab (Ilaris)

NHS England has launched a 30 day consultation on the use of canakinumab for treating the following periodic fever syndromes: TRAPS, HIDS/MKD and FMF. More info and link to the consultation can be found in this post. Closes 1st Sept 2019.

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 Monday 16th – Friday 20th September.

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.

Refresh the Rare Disease Strategy

Autoinflammatory UK, alongside 125 other rare disease patient organisations including Rare Disease UK, the Genetic Alliance and many others, signed Rare Disease UK’s open letter calling on the Government to review and refresh the UK Strategy for Rare Diseases a few months ago.

Yann Le Cam Eurordis

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.

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