News

News

Patient Event Saturday, 11th June 2016

We had hoped to release the programme for the event this weekend.

Read more: Patient Event Saturday, 11th June 2016

Things People with Rare Diseases Wish others Understood

How often do individuals with rare condition hear these words?

Read more: Things People with Rare Diseases Wish others Understood

Closing Date for Patient Conference & AGM

Not long now until 11th June 2016 and the long awaited patient conference and AGM.

Read more: Closing Date for Patient Conference & AGM

Patient Conference & AGM 2016

Bookings now being accepted for Patient Conference. 

Read more: Patient Conference & AGM 2016

British Association of Dermatologists UV app

UV app has been created by the British Association of Dermatologists (BAD) in collaboration with the Met Office.

Read more: British Association of Dermatologists UV app

Rare Disease UK Publish Progress Report

UK Rare Disease Forum (the group charged with monitoring the implementation of the UK Strategy for Rare Diseases) publishes first progress report. 

Read more: Rare Disease UK Publish Progress Report

Fast-tracked skin cancer drug pembrolizumab gets approval

BBC report that a new drug for advanced skin cancer should be made available on the NHS in England, experts recommend. 

Read more: Fast-tracked skin cancer drug pembrolizumab gets approval

Alert from MHRA and British Association of Dermatologists

The Medicines and Healthcare products Regulatory Agency (MHRA) and the British Association of Dermatologists are today warning people not to purchase or use Etin Skin Solution, a lotion claiming to treat skin conditions and known to have been supplied from various Asian and African beauty shops.

Read more: Alert from MHRA and British Association of Dermatologists


 Originally produced by Professor P. A. Farndon, Clinical Geneticist, Jim Costello (deceased) and Margaret Costello.  We are reliant on a team of medical advisors for the clinical content of the website. We are grateful for their continuing support. 
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