Category: Awareness

reply from Matt Hancock Secretary of State for Health to Open Letter

Secretary of State for Health replies to our Open Letter

The UK’s Secretary of State for Health and Social Care has taken note of our open letter published on our website on 20th September 2019 asking for continued access to European Reference Networks (ERNs) and to be included in Article 50 negotiations. Today we received a reply from Matt Hancock.

Our Chair invited by Novartis to Spain

Autoinflammatory UK’s Chair invited to Valencia in Spain by Novartis to share with professionals in the medical and pharmacological field first hand experience of the patient journey for people suffering from rare autoinflammatory disease.

Rare Summit 2019 - Cambridge Rare Disease Network


RAREsummit19 is a 1 day summit focusing on patient centricity in rare disease – mastery, opportunities and trends in the drug development process, healthcare and assistive technologies.
Organised by Cambridge Rare Disease Network:
23rd September
9:00- 5:30pm – £25 +

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.

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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