Rare Disease Day 2017
28th February 2017
Rare Disease Day 2017Events were organised around the UK, Europe and the world to raise awareness about people living with rare diseases.
Raising awarenessMax Appeal recently partnered with Mediaplanet UK on the Rare Diseases Campaign in The Guardian newspaper and online. View the link below:
Read motivating insight from leaders and learn more from patient stories on rare diseases.
A North / South Conference on Rare Disease in IrelandJulie Wootton and Claire Hennessey attended the Rare Disease event at the Royal Hospital Kilmainham, Dublin.
Ann Lawlor from 22q11 Ireland spoke about her experiences and those facing families affected by 22q11 Syndrome.
Stronger collaborating and working togetherWe heard how 'challenges choose us' and how 'patients are often experts in their own condition'...that's something I've heard before!
We need to highlight to politicians and policy makers the impact of rare diseases. 80% of rare diseases have a genetic basis for the underlying condition. Many rare diseases are multi system disorders and we must not forget the 'real people' they affect. They often have huge impacts on the family, at school and many aspects of daily life.
We need to develop models of integrated care. Currently there is a lack of knowledge of the costs of rare diseases. Affordability continues to be an issue for treatments.
Patients need to be involved in the earliest possible stage, engaging in the design research.
22q11 communityWe continue to find ways to work together with other charities and a wide body of researchers with an interest in 22q11 Syndrome.
Anne is working hard to welcome many 22q11 families to Dublin in October 2017 as 22q11 Ireland is hosting the 2nd 22q11 European conference. She is hoping to include a programme especially for teens and young adults. More news to follow shortly.