Category: Consultations

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.

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.

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.

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