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With Rare Disease Day 2023 taking place on 28 February and nearly one month away, we outline some of the key activities and events that our rare disease advocates and the international community can participate in to show our support! Since its launch, Rare Disease Day (RDD) has played a critical part in building a […]

We are thrilled to share that an official letter regarding FH Paediatric Screening and endorsing the Prague Declaration was sent to the Swedish Minister for Health Care, signed by the Czech Deputy Prime Minister and Minister of Health, Mr. Vlastimi VÁLEK. In the official correspondence welcoming the new Swedish Presidency of the EU, officials of […]

Can you imagine living on no more than 20 grams of fat a day? This is the reality for people living with Familial Chylomicronaemia Syndrome (FCS), as it represents a crucial way for managing their disease and symptoms. On 19 January 2023, FH Europe, in partnership with Action FCS and EAS, prepared a webinar, dedicated […]

Welcome to the new member of the Network, Action FCS from the UK, who support and advocate for people with familial chylomicronaemia syndrome (FCS). As we kick off the new year with a long awaited webinar on FCS, we have some exciting news to share. After a very successful FH Europe Annual Network meeting, where […]

This year is very important to FH Europe. On the horizon, we have some key structural changes and significant potential for growth for which we have been preparing for some time … while ensuring that after 3 years of external factors affecting what we do and how we do it, we get more time to […]

In the December edition of FH Europe’s Heart Beat newsletter you’ll find news of the following: FH Europe President´s review of the year. Important information about “FH and Women” Survey. Interview with Vlastimil Válek, Czech Health Minister, on a European Action Plan for Rare Diseases. Big thank you to all the kindhearted volunteers! Important updates […]