FH Europe Newsflash - December 2017

Putting the Heart First in Cardiovascular Care event and news from the FH network...

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Registered Charity No: 1170731 Registered in England & Wales

October 10 event in the European Parliament
– Putting the Heart First in Cardiovascular Care

A number of FH Europe members attended the 10 October event at the European Parliament in Brussels hosted by MEP Karin Kadenbach of Austria.

Speakers at the event - pictured left to right: Ulf Landmesser of the Dept of Cardiology, Charité University Hospital, Berlin; Kristyna Cillikova; Michal Vrablik Associate Professor of Internal Medicine at the 1st Faculty of Medicine, Charles University in Prague, the Czech Republic and Chair of Czech Atherosclerosis Society; EAS President, Lale Tokgozoglu; Irish MEP Nessa Childers; Susan Connolly of the National Heart and Lung Institute, Imperial College.

An interview with Pavel Poc, who is a vice-chair of the Parliament’s Environment, Public Health and Food Safety Committee appeared in the Parliament magazine on on 26th September.

Since the meeting, Pavel Poc prepared an open letter to the European Health Commissioner and EU Health Ministers, to which FH Europe has offered its support.

Following on from the March visit to Brussels by FH Europe Trustees Gabriele Hanuaer-Mader and Gunnar Karlsson, accompanied by paediatrician Professor Albert Wiegman of the Netherlands, Professor Wiegman has been in contact with the Health Commissioner’s Cabinet and it is hoped that this will lead to positive developments in the year ahead.

Destination Budapest – FH Europe holds its annual network meeting in the Hungarian capital

The FH Europe meeting, held on the banks of the river Danube covered a wide range of topics. Members learnt about the associations in Hungary, the Netherlands and Slovakia, heard from Hungarian medical experts Associate Professor Pál Maurovich-Horvat and Prof György Paragh. In line with current events and challenges, the pros and cons of e-media and Facebook were presented by Inese Maurina of ParSirdi, Latvia and Francesco Fuggetta of ANIF in Italy whilst Gunnar Karlsson and Theodora Varkonyi-Weisz introduced aspects of the new PCSK9i treatment and its availability to patients in Europe.

FH Europe members at the 2017 annual network meeting

Internet streaming of the Saturday afternoon presentations was an innovation welcomed by a number of FH patients who were unable to attend. Emma Eatwell of Hanover communications agency provided training in advocacy, and with a colleague, persuaded some brave volunteers to carry out practice sessions in delivering the FH message to decision-makers.

All members present at the meeting, recorded brief introductions to their associations in both their own language and English for use on their and FH Europe’s websites. Recorded material from the meeting will be available to members on the website in early 2018.

Looking ahead to 2018: The strategy for 2018 activities was discussed - next steps planned to help members raise awareness of FH in their countries include media training, planned for Vienna in March 2018. The venue for the next annual meeting will be decided by a popular vote, taking into account time and cost of travel to the meeting.

Trustee Board news: After a full year as a registered charity, some changes will take place in FH Europe’s Trustee Board. To ensure that the Board can bring varied experience, initial members agreed a rota for representation and in that spirit, Isabel Gaspar of Portugal steps down in mid-December. Athanasios (‘Thanos’) Pallidis of Greece advised that he is stepping down as President of LDL Greece in December and so a call has gone out to members to seek two new Trustee Board members. The new board line up will be published in the next edition of the e-Flash.

Thanks go from all member associations to Isabel and Thanos for their support to FH activities, from manning conference stands in Europe, issuing press release information or providing a medical overview for messaging of the key symptoms that help identify FH and of course, carrying out the role of Trustee. Isabel will remain as Portuguese representative and we wish both good health and every success in their career and all their future voluntary activities.

News from our members

Austria: On Wednesday 8 November, the FH Patient Organization FHchol Austria (president G. Hanauer-Mader) and the FH Registry & Cascade Screening of the Austrian Atherosclerosis Society (principal investigator is the renowned Austrian atherosclerosis researcher Prof. Christoph Binder) jointly hosted a FH Symposium to raise awareness of FH among the general public and the medical professions. More than 120 people attended

the event at the General Hospital/Medical University Vienna Campus. International speakers included paediatric cardiologist Professor Albert Wiegman of the Netherlands and, on the subject of registries, Dr Mario Stoll of Uruguay and Dr Nina Schmidt of Germany. Two Austrian FH patients spoke about their experience of living with their condition.

Pictured to the left: Gabriel Hanauer-Mader with Dr Mario Stoll of Uruguay, who has pioneered registry work in Urguay. Pictured right: Gabriele Hanauer-Mader introduces FH patient, Monica, who presented her FH experience to the symposium.

Greece: Athanasios Pallidis of Greece has advised that the Greek Department of Health has expressed support to reimburse treatment for Homozygous patients to 100%. In Greece patients normally have to pay 25% of the price for drugs.

Ireland: NIPC National Prevention Conference 2017 – Investment for the Future

The fourth NIPC National Prevention Conference was held on Saturday, 18 November in the Croí Heart & Stroke Centre, Galway, a packed event featuring world class national and international speakers and experts in the field of prevention. Conference highlights included presentations from Professor David Wald on Early Detection and Prevention Screening for Child-Parent FH, Professor Rick Grobbee (President of the European Association for Cardiovascular Prevention and Rehabilitation), Professor Sanjay Sharma (Medical Director for Virgin London Marathon), as well as a soapbox panel session with national experts on health resource priorities in Ireland, facilitated by World Heart Federation President, Professor David Wood. Jules Payne, chair of FH Europe, who attended the conference, has reported that FH is now on the agenda in Western and Southern Ireland and has noted that Croí has been instrumental in pulling this together and influencing the relevant people.

Dr Ambrose McLoughlin, Chairman Heartbeat Trust and former Secretary General of Ireland's Department of Health, addresses conference delegates on 18 November. Join the NIPC Alliance for more information.

Portugal: Unfortunately, Isabel Gaspar a member of the Trustee Board, suffered an ischemic stroke in August and so plans for runners representing the Portuguese association to participate in a 2017 10km run with 10,000 runners could not go ahead. FH

Europe members send good wishes to Isabel Gaspar for improved health in the year ahead.

Romania: Monica Popescu, who once again represented FOBAC of Romania at the FH Europe
meeting recently gave a presentation at her University during the annual student congress on raising awareness for FH patients, presenting to them about HEART UK and FH Europe. As can be seen from the slide shown below (in Romanian), cardiovascular disease is the principal cause of death in Romania.

Improved treatment could help reduce the current rate of one heart attack being suffered by a Romanian every half hour, which one person in 10 does not survive.

Jules Payne, chair of FH Europe is pictured at the Budapest meeting with
Monica Popescu of Romania

Spain: Dr Pedro Mata, founder of the Spanish FH association, was interviewed in November for a Galician newspaper. In the article (In Spanish) Dr Mata explains that Spain has the largest FH register in the world, with 4,770 patients from 880 families

U.K.: Tuesday, 10 October marked a key event for raising FH Awareness in Great Britain. HEART UK held a major event in London during UK cholesterol month - 35 charity ambassadors received advocacy training for a morning and then headed for the House of Commons to deliver the FH message and discuss their story with respective members of parliament. Letters had been sent in advance to arrange meetings – one intrepid ambassador exercised his right to arrive at the House of Commons and request a meeting on the spot.

Pictured to the left: The Kara family with Rt Hon Stephen Timms, Labour MP for Forest Gate, London. Pictured to the right: HEART UK staff, ambassadors and FH patients.

A video of the day can be found HERE.

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.