Annabelle’s Challenge heads to Westminster on Rare Disease Day with James Frith MP.
The charity with a brave girl from Bury at its heart attended the reception in Parliament to mark Rare Disease Day with Bury North MP James Frith to discuss their concerns first hand coping with a child diagnosed with a rare genetic condition and share their vision for the future with the charity.
Nine-year-old Annabelle Griffin suffers from Vascular Ehlers-Danlos Syndrome (vascular EDS), it causes collagen deficiency and means Annabelle is at daily risk of her internal organs and arteries spontaneously rupturing.
Annabelle’s Challenge was set up by her parents Jared and Sarah Griffin, of Wilby Close, Brandlesholme, to raise awareness of the condition and to support families affected by vascular EDS across the UK.
Vascular EDS is estimated to affect between 1 in 50,000 and 1 in 200,000 people. It is caused by a gene mutation affecting a major protein, which causes weakness in vessel walls and hollow organs.
Jared “We are extremely grateful to James Frith for taking the time to meet with us to discuss our concerns and charity plans. James has supported us from the start and to have rare diseases as one of his priorities is to be applauded”.
The reception hosted by Rare Disease UK included speakers providing an update on progress of the implementation of the UK Strategy for Rare Diseases and other developments affecting rare disease patients and families. Steve Brine MP, Parliamentary Under Secretary of State for Public Health and Primary Care also provided a talk.
Sarah said: “Our aim is to increase public awareness and the education of medical professionals of this condition including promoting research, we are delighted James Frith could attend and offer support as our local MP”.
James Frith "It was a real pleasure to meet the team from Annabelle's Challenge on Rare Disease Day. I am committed to bringing attention to rare illnesses and calling on Government to ensure that sufficient funding and resources are provided to improve the lives of those living with these diseases."