Findacure is a UK based charity that is building a rare disease community to empower patient groups. In October, I attended the Showcase run by Findacure at the Centre for Life in Newcastle-upon-Tyne.

In line with Findacure’s mission to promote collaboration, the day consisted of talks by clinicians and researchers, managers in the pharmaceutical industry, as well as an impactful life story from a patient with Osteogenesis Imperfecta (Brittle Bone disease).

Most of the talks were interesting and, despite being very specific to particular diseases, there were positive messages that could be applied across the board of rare diseases. What draws us together is the human aspect; the isolation, the struggle for recognition (especially with invisible diseases), the importance of support from loved ones and the belief that we can still be the best we can be despite a disease.

A hot topic, now and for the future, was drug repurposing. Drug repurposing finds new uses for existing medicines, which makes it faster and cheaper than traditional drug discovery – ideal for underfunded rare diseases.

As befits a centre that supports world-class science in the North East, Genomics also was given an important place in the programme.

There were patient groups and life science professionals in the audience and plenty of opportunities during breaks to network.

The variety of delegates illustrated that through Findacure, the rare disease community can interact between policy makers, the medical world, active patient advocacy organisations and other stakeholders. Emphasis keeps returning to the patients who are at the heart of research. We must educate ourselves, watch out for clinical news and contribute to data collection.

 

Further information can be found at:
http://www.findacure.org.uk
http://www.rarediseaseday.org
http://www.orpha.net
http://www.genomicsengland.co.uk

 

Lucie

Related Posts

Susie attends Parliamentary Reception for Cancer52 On 20th April, Susie went to Westminster and attended a parliamentary reception organised by Cancer52, a coalition of more than 80 charities represent...
Not just for aspiring doctors and nurses… As patients, we want to be as best informed as possible. Here are some of the most commonly encountered medical prefixes and postfixes, from Rasmussen...
My PMP journey and why I’m doing my bit to raise a... I was diagnosed with PMP aged 32, after many months of stomach pains, bloating, constipation and irregular periods. After numerous trips to my GP, whi...

We are currently posting orders from our shop no more than once a week. Please be patient with us. Dismiss