A small team within Swedish Orphan Biovitum (Sobi) UK& RoI (more information below) are taking on a challenge to raise money for a charity dedicated to those with a rare disease known as FCS (Familial Chylomicronaemia Syndrome).

FCS is an ultra-rare genetic condition.  People with FCS must severely restrict their fat intake (amongst other dietary restrictions) as they don't have the enzyme which breaks it down, or what enzyme they do have doesn't work properly.

Some members of the Sobi team will be embarking on the restricted diet that some of those living with FCS have to manage on a daily basis (10g/day, equivalent to approx. 2-3 walnuts!) restricted sugar, low carbohydrate and no alcohol.

The challenge will take place for 4 days (22^nd-25^th February)

People with FCS are advised to eat between 10g-20g fat per day, restrict added sugar and drink no alcohol. Many aim to restrict to 10g of fat/day to try to minimise their symptoms. This is difficult to do and can be socially isolating.  It makes being away from home tricky, and impacts on both the person with FCS, and all those around them.

Funds raised from this challenge will go directly to Action FCS, a charity that raises awareness of, and educates with regard to, the patient experience of Familial Chylomicronaemia Syndrome (FCS).

Sobi UK and RoI have announced their latest fundraising challenge to coincide with Rare Disease Day, which takes place on 28 February 2021, and aims to raise awareness of many rare diseases. Hundreds of patient organisations from around the world will hold activities to mark the occasion.

We would, on behalf of Action FSC, be very grateful for any donations to our justgiving page no matter how large or small – every penny will make a difference to those who are supported by Action FCS.

Huge thanks!

About Sobi

At Sobi, we are transforming the lives of people affected by rare diseases. As a specialised international biopharmaceutical company, we provide sustainable access to innovative therapies in the areas of haematology, immunology and specialty care. We bring something rare to rare diseases – a belief in the strength of focus, the power of agility and the potential of the people we are dedicated to serving.

You can find more information about Sobi at www.sobi-uk.co.uk

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