Statement of Support

Statement of Support

As armed conflict erupts on Ukrainian territory, FH Europe, the European FH Patient Network, stands with the Ukrainian people. At the same time, we would like to extend support to the patients, individuals and their families affected with FH and other inherited lipid conditions on both sides of the conflict. Among them many living with rare and severe conditions like HoFH and FCS.

FH alone affects an estimated 1 in 300 persons, (about 150’000 people in Ukraine and further 480’000 in Russia). Of them, those with its rare form HoFH require the most support and effective, mostly hospital-based treatment. As a community that is at a very high risk of developing cardiovascular disease prematurely, already exhausted by the COVID pandemic, often more dependent on regular care, the wartime destruction of vital infrastructure, such as hospitals and care centres, threatens the lives of this vulnerable population, diverts health resources to trauma. As the situation escalates rapidly, we need to avoid a major humanitarian crisis and ensure that people living with any of the inherited lipid conditions – common and rare alike, are not left behind.

In Ukraine, the impact of the invasion threatens to bring more challenges for a community already facing profound difficulties since the deterioration of the political environment in 2014 when the conflict first erupted. Ukrainian Department of Health figures show that 80% of patients with rare diseases in Ukraine lose their lives before the age of 5 due to a lack of systematic diagnosis and qualified treatment. This is higher than the estimated 50% in France, for example.

As the military action continues, the essential health services and access to life saving medications are disrupted on one side of the conflict. At the same time, the imposed sanctions will undoubtedly affect access to vital medication on the other side of the conflict as well. Therefore, major efforts are required to restore and strengthen health services, including access to medicines and medical equipment on both sides.

Today, we wish to commend the commitment and determination and express our support to Prof. Olena Mitchenko and her medical colleagues as well as the volunteers of the Ukrainian FH patients’ organization, who, notwithstanding the challenges facing their community, have not ceased for a moment in their work to support the patients in Kyiv and wider Ukraine.

We also echo the statement of solidarity issued by EURORDIS-Rare Diseases Europe, as well as the one issued by EFPIA – the European Pharmaceutical Industry.

We are calling on our Network of patient organizations, partners, and friends to show support and offer help to those patients who might be fleeing Ukraine to seek shelter elsewhere.

We call on the national governments, the European Union, the United Nations, WHO Europe and other UN agencies, humanitarian organisations and the international community at large to protect the most vulnerable, who are caught in the conflict, unable to flee and without access to humanitarian aid. The current situation brings into sharp focus, once again that the needs of people living with chronic and rare disease are real, huge and unmet.

FH Europe is ready to support the FH patient organisations in Ukraine and in Russia as best we can to understand the challenges they are facing and to help the international community understand the challenges people living with FH, HoFH, elevated Lp(a) and FCS face on the ground. In the meantime, we are determined to work tirelessly with our international stakeholders, our Network, healthcare professionals, academia and European policy makers to fulfil our mission.

FH Europe

The European FH Patient Network which currently consists of 29 organizations in 27 countries across Europe, actively works to improve Europe-wide awareness, understanding, and access to diagnosis and treatment of inherited lipid conditions, specifically Familial Hypercholesterolaemia (FH), its rare and severe form – the Homozygous FH, elevated lipoprotein (a) – Lp(a), and Familial Chylomicronaemia Syndrome (FCS), so that all those impacted receive optimal treatment and support, resulting in longer and healthier lives.

Contact

Magdalena Daccord
Chief Executive
FH Europe
md@fheurope.org