Our Open Letter features in Private Eye

Private Eye Issue 1507

Our Open Letter features in Private Eye

In the latest edition (1507 – 18-31 October 2019) of Private Eye magazine, the Medicine Balls column written by M.D. (also known as Dr Phil Hammond) has featured our open letter to Michael Gove and Matt Hancock the Secretary of State for Health and Social Care. A sincere thanks to Dr. Hammond for taking the time to meet and listen to our #RareDisease worries. Read the full column here.

Warm Home Discount

Warm Home Discount

The Warm Home Discount Scheme is an initiative from the government that helps low-income and vulnerable households with a discount on their electricity bills over the winter. Apply now.

It is worth £140 to people with low incomes. Contact your energy company as soon as possible to see if you qualify.. Eligibility criteria and energy companies taking part listed in the post.

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.

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

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