Ivy'v Story What care and support is available for those with deletion 22q11 syndrome?


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Rare Disease Day 2017
28th February 2017

Rare Disease Day 2017

Rare Disease 2017Events were organised around the UK, Europe and the world to raise awareness about people living with rare diseases.

Raising awareness

Max 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.

bit.ly/2lF2pma Right Arrow

A North / South Conference on Rare Disease in Ireland

Image: 20170228_162404_medium.jpgJulie 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.

Making the case

Image: 20170228_162615_medium.jpgMax Appeal has been giving this message to the 22q11 APPG.
Image: 20170228_16261531449076_medium.jpgWe already know 22q11 Syndrome is massively under diagnosed.

Stronger collaborating and working together

Image: 20170228_144318_medium.jpgWe 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 community

Image: 20170228_170019_medium.jpgWe 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.