Registered Charity No: 1170731 Registered in England & Wales
Highlights from the Network
FH Europe appoints two new Trustees
Two new Trustees have now been appointed to the Trustee Board of FH Europe: Inese Maurina of ParSirdi.lv, Latvia and Theodora Varkonyi-Weisz of SGFH, the Swiss FH organisation, were appointed by the current Trustees in January 2018.
Inese Maurina was a co-founder in 2011 of the Latvian FH patient organisation ParSirdi.lv which she now heads. Having originally qualified with a Masters in Social Sciences, she brings long-standing experience of public relations, journalism and patient advocacy to her role. She is chief editor of the Latvian heart health magazine “Sirds un veseliba” (http://sirdsunveseliba.lv/lv/) and is a freelance writer for Latvia’s leading health magazine “levas veseliba” as well as having a PR agency ‘Be Proud’.
Theodora Varonyi-Weisz is a co-founder and director of the Swiss FH organisation. Hungarian by birth, she played a very active role in organising the venue and support for the Budapest meeting in November 2017 and also setting up the Hungarian FH organisation. She is fluent in seven languages, holds an MBA in Economics and Marketing Management, and a bachelor’s degree in Pharma Sciences. She is an active proponent of a healthy lifestyle motivating other people to undertake regular exercise by giving pilates, yoga and core strength courses.
FH Europe website updates its image
The new FH Europe website was launched for FH Awareness Day on 24th September 2017. At the November 2017 meeting in Budapest, members agreed that they would like a positive illustration to feature the multi-generation and multinational features of the disease and the possibility of living a healthy and happy life as part of a worldwide family of FH patients.
FH Europe has the copyright for this image and is happy for member organisations to use it on their own sites or publications if they wish. Please contact Diana Maxwell if you have any queries.
Capacity building opportunity for members of the European Patients’ Forum
The European Patients’ Forum is inviting patient organisations within its membership to take part in an eight-month capacity-building module. The programme “Empowering Leadership and Positive Governance” will combine online and face-to-face training and will start in April.
The programme targets patient organisations’ leaders from across Europe, specifically Bulgaria, Hungary, Poland, Romania, Slovakia and the Western Balkans. An initial 2-day meeting will take place in Slovakia in May 2018.
The application form can be accessed here – applications close on 15 March 2018 - spaces are limited. All travel, accommodation and course costs for participants are covered by EPF.
For information on training, application form etc. please see the EPF website for more details.
Can you help? Request for patient education information for Acipimox
HEART UK has received a request from the Lipid Disorders Clinic in Christchurch, New Zealand. It is using the drug Acipimox in adults with increased frequency and wishes to develop a patient education leaflet. They have asked if anyone else is using Acipimox and has a patient education leaflet they would be willing to share for them to view? Please contact dm@fheurope.org if you can help.
News from our members
Belgium - Belated congratulations to Professor Olivier Descamps who was elected to be President of the Belgian Atherosclerosis Society in autumn 2017.
Finland - Anna-Mari Hekkala of Finland has advised us that PCSK9i is now reimbursable for Finnish patients.
Netherlands - FH member association the Hartenvaatgroep has changed its name and is now known as the Hartenraad (meaning ‘Heart Council’) Here is the website. Information about FH is found here. Twitter Facebook (details will be updated as soon as possible)
Ireland - A ‘Cholesterol Masterclass’ is being held at the Croì Heart and Stroke Centre in Newscastle, Galway on Friday 9 March. The opening session will look at lipid guidelines, management of lipids in special populations and the controversies regarding statin intolerance. A second session will look at FH in Ireland, lifestyle approach, innovative approaches to FH screening and challenges to adherence.
A further masterclass will be held in Dublin in April.
Spain - Following the ‘Hypercholesterolaemia Dialogues’ in Spain, a collaborative project organised by the Spanish Heart Foundation (Fundación Española del Corazón - FEC) and Deusto Business School Health (DBSH) with the support of the World Heart Foundation, Spanish member association Fundación Hipercoleterolemia Familiar (FHF) has asserted that Spain should improve and manage hypercholesterolaemia and position it as a priority cardiovascular risk. A joint declaration was presented in a press conference on 18 January. Further details (in Spanish language)
Madrid symposium: On Friday 2 and Saturday 3 February, FHF held a symposium in Madrid on new developments in diagnosing and treating FH. The FHF website also reports on a study published on 25 January 2018 British Medical Journal 2018;360:J5855
Researchers, from University College London, analysed 141 studies to estimate the relative risks of smoking one, five, or 20 cigarettes a day. They found that men who smoked one cigarette a day had 45% the excess risk of heart disease and 41% the excess risk of stroke associated with smoking 20 cigarettes a day, relative to non-smokers.
Turkey - congratulations on a new patient association! Turkey has now established its own FH patient association and has launched a website
with best wishes of the season to you all,
Jules Payne
Chair of FH Europe
FH Europe is supported by an educational grant from Amgen Limited. This publication has been supported by an unrestricted educational grant from Aegerion Pharmaceuticals Limited.
On Friday 2 and Saturday 3 February, FHF held a symposium in Madrid on new developments in diagnosing and treating FH.
