In July, the Minister for rare disease at the Department for Health and Social Care, Baroness Blackwood, announced a ‘national conversation’ on rare disease. This conversation aims to gather a range of views from the rare disease community.  The views collected from patients, families and carers, healthcare professionals (including GPs, specialist rare disease clinicians, clinical academics) and industry will be used by government to inform a rare disease framework to improve the lives of people living with rare diseases. This will follow on from the current UK Rare Diseases Strategy which expires at the end of 2020.

To start the conversation, a survey has been launched to understand the major barriers that healthcare professionals working with rare diseases face. Make sure your voice is heard by completing this short survey by Friday 29^th November 2019.

Kasia was invited by the St Peter’s Medical and Biosciences Society to talk about our work this month.

Thank you for inviting us and for your hospitality, it was lovely to meet you all and a really enjoyable afternoon!

Pint of Science is coming to Newcastle again!

An exciting programme of science focused talks in 6 city locations, all in relaxed atmosphere and with refreshments on hand! Come meet Newcastle scientists and see what is being studied in our beautiful city.

To see the programme and book your slot, please click here: https://pintofscience.co.uk/events/newcastle

The International Rare Disease Day this year is highlighting the power of people coming together, the importance of social care and of kinship when faced with rare disease diagnosis. In the last week of our Black Box cinema we’re exploring the power of kinship.

What connects us? How do we relate to the world around us? Is kinship more than family?

For a full programme please visit: cnos.org.uk/blackbox and blogs.ncl.ac.uk/blackbox

11th of February was the International Women and Girls in Science Day. We’ve organsied a free event at the Lit and Phil in Newcastle to celebrate women in film and in science. Come along to a free screening of Art from the Northumbria Uni’s CNoS fine art research group, followed by a discussion between the artists, Dr Ana Topf and Dr Kasia Piróg hosted by Prof Chirstine Borland. Details below: