- September 30, 2019
- Autoinflammatory UK
- Awareness, Consultations, Lobbying, Media, NHS, Rare Disease, UK Government
- No Comments
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.
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.
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.
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.