Buckinghamshire's MPS Charity to highlight 'Fabry Awareness month' this April

Buckinghamshire based charity, MPS Society, is celebrating Fabry Awareness Month this April.

Monday, 12th April 2021, 10:08 am
Updated Tuesday, 13th April 2021, 1:31 pm
Loretta MacInnes

They hope to bring increased awareness of Fabry to healthcare professionals and the wider UK population.

Fabry is a rare genetic disease which affects between 1:40,000 people. It is estimated that nearly 6% of the UK population (around 3.5 million people) will be affected by a rare disease at some point in their lives.

Fabry remains a severely underdiagnosed, misdiagnosed, and often misunderstood disease.

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One of MPS Society’s supporters, Loretta MacInnes, was diagnosed with Fabry when she was 50 years old despite having symptoms since childhood.

She has written a collection of blogs explaining her journey with Fabry which can be viewed here mpssociety.org.uk/fabry-awarenessThe charity is encouraging everyone to read and share her blogs as much as they can, through word of mouth or social media, to spread awareness of Fabry and look out for the tell-tale signs of the disease.

MPS Society have a number of fun virtual activities lined up for the general public and their supporters to coincide with Fabry Awareness Month.

They launched Active April, by challenging supporters to get fit this April by walking, running or wheeling 50km.

Also, they are hosting an Easter themed DNA kids online party on 9 April.

The charity’s Group Chief Executive Officer, Bob Stevens, says, “We are hoping that Fabry Awareness Month 2021 will be our biggest and best yet. We are constantly striving to increase awareness of Fabry and other rare life-limiting diseases to fund vital research for them.”

If you wish to donate to MPS Society, please visit mpssociety.org.uk/donate-now or call our Fundraising team on 0345 389 9901.

By donating just £6, you could pay for a newly diagnosed family to receive a disease specific information booklet.