Category: Rare Disease

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.

ENCA Meeting

SURVEY: Do you have a child with a rheumatic and/or auto-inflammatory disease?

ENCA are conducting a short anonymous survey about vaccinations for children with rheumatic and/or autoinflammatory conditions.

5 things to know about parenting a child with a rare disease

A great article where Omaira Gill shares her personal experience of the five things to know about parent a child with a rare disease. She goes into detail and gives hope and advice to any parent with a child suffering from a #RareDisease.

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 +

Difficulties getting treatment

Difficulties accessing treatment?

Are you facing difficulties accessing your treatment for your rare autoinflammatory condition? We would appreciate if you could take a few minutes to complete this anonymous questionnaire. Concise, short and accurate answers.

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.

Autoinflammatory UK\'s content is protected.