Jules Payne is Chief Executive of HEART UK – The Cholesterol Charity. Jules has been the driving force to firmly place cholesterol on the political agenda and for HEART UK to become the centre of expertise for cholesterol and all lipid conditions. HEART UK now sits on many decision-making bodies including the FH Steering Group chaired by Prof. Huon Gray, National Clinical Lead for Cardiovascular Disease and the National Cardiovascular Intelligence Network which has led to the significant positioning of FH in policy.
Jules leads on developing the HEART UK Annual Conference which attracts a worldwide delegation as the ‘must go’ conference for anyone interested in lipids in primary and secondary care.
Jules was also instrumental in establishing a European network of support groups for patients with familial hypercholesterolaemia and chairs the FH Europe Committee with 25 member countries.
Hon. TreasurerBio to follow
Gabriele Hanauer-Mader is voluntary president and founder of FHchol Austria, the Austrian patient organization for patients with FH or related genetic lipid disorders. Starting way back in 2004 when her daughter was diagnosed with severe FH at the age of four, Gabriele has never stopped trying to convince patients, doctors, the general public and political stakeholders that FH is a life-threatening condition if not diagnosed and treated early on. Raising awareness of FH, lobbying, media relations and PR, cooperation with medical professions, lecturing at conferences at home and abroad, international cooperation and reimbursement of necessary drugs for FH patients are among her manifold duties and interests as a president of FHchol Austria.
Gaby is also a board member of FH Europe and CholCo e.V. She is a member of the Austrian Atherosclerosis Society and coordinator of the FH registry & cascade screening project in Austria.
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 is supported by an educational grant from Amgen Limited, Sanofi, Regeneron, Akcea Therapeutics Inc. and Amryt