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News: FH Europe newsletters

FH Europe E-Flash || July 2019

Friday 2 August 2019  
Posted by: Carmel Hayes
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July 2019

FH Europe and European Atherosclerosis Society FH Studies Collaboration meet in Maastricht 

The city of Maastricht in the Netherlands was the venue for a ‘getting to know you’ meeting on Sunday 26th May, between a group of FH Europe member association representatives and international members of the European Atherosclerosis Society Studies Collaboration (EAS FHSC). Trustee Board member Gabriele Hanauer-Mader and EAS FHSC chair Professor Kausik Ray co-chaired the meeting to discuss the challenges of attaining accessible and affordable treatment.
Photo: Denis Abbonato Photography
FH Europe Trustee Board members Inese Maurina and Theodora Varkonyi-Weisz were joined by Florentina Sirbu of Belgium and Askar Faskhutdinov of Russia to discuss the benefits of sharing knowledge and experiences with EAS FHSC members. FHSC representatives included Professor Meral Kayikcioglu of Turkey, present in her dual capacity as FHSC member and founder of the Turkish Patient Association. (Professor Kayikcioglu may be seen speaking at the Congress about her work on FH and patient registries ). 

The main plenary sessions of the 87th EAS Congress took place over three days. Illustrated highlights of this annual event, together with news from the Opening Ceremony appear online which include reports from late breaking sessions on FH and current studies.

The EAS FH-Studies Collaboration held a meeting on the afternoon of Wednesday, 29th May at which FH Europe Trustee Board member Theodora Varkonyi-Weisz gave a presentation to FHSC members on the activities of FH Europe.

Follow up on the FH Global Call to Action 

The World Heart Federation (WHO) is the global organisation leading on the Global Call to Action on FH, with responses being coordinated by the FH Foundation in the USA. This Call to Action is a follow-up to the initial FH report from WHO that was published in 1999.  The report was part of the WHO Human Genetics Programme (1999)   A meeting recently took place in Geneva to make progress on the global agenda. The World Heart Federation arranged an event about FH, which was streamed live on Facebook .

Over the past 20 years, there has been considerable progress in the treatment of FH, but the majority of cases remain unknown, with less than 1% being identified in some European countries. FH Europe and the EAS FHSC have contributed responses from Europe and worldwide and continue to play an active role in the drafting process of a report which sets out recommendations for action by the WHO.


Endocrine Disruptors:

Shortly before the May European Parliament 2019 elections, on 18 April, the European Parliament (EP) adopted a non-binding resolution asking the European Commission to ensure a higher level of protection against endocrine disruptors (EDCs) by making a legislative proposal on the matter no later than June 2020.
Endocrine disruptors are chemical substances that alter the functioning of the hormonal system by mimicking, blocking or interfering with the production, metabolism, or action of hormones in the body. They are found in foods, packaging materials, cosmetics, drinking water and consumer products such as clothing, furnishings and toys. They negatively affect the health of humans and animals and have been linked to serious health conditions such as obesity, diabetes, hormone-dependent cancers, reproductive disorders, neurodevelopmental disease and intellectual impairment.
In late May, Members of the European Parliament and civil society representatives joined forces to urge the European Commission to act soon on defining a new strategy. This follows the EP’s rejection last autumn of the proposed endocrine disruptor chemicals (EDC) definition. A policy analysis report updated to May 2019 is available in English:

(Additional information from The Lancet, vol. 7, May 2019 with thanks to the Spanish FH association)
A public consultation will be held in the near future as the European Commission hopes that Commission adoption will take place in the second quarter of 2020.

Healthy eating and taxation – what’s your view?*

Romania: In mid-May, EURACTIV reported that the Romanian government has decided to promote the consumption of healthy and traditional foodstuffs by cutting their VAT rate from 9% to 5%. According to Finance Minister Eugen Teodorovici, this will encourage consumption of healthy food and boost sales of Romanian traditional, mountain, ecological, organic or other products authorised by the agriculture ministry. Although the government estimates that the measure will create budget losses of €175 million over the next four years, it is confident this will support domestic consumption of high-quality food products by reducing prices and increasing sales - alcohol will not be included. (The general VAT rate in Romania is 19%, while the reduced rate is 9%.  EU member states are in general free to apply reduced rates to foodstuffs.)

According to the State of Health in the EU report, Romania has the second highest mortality after Bulgaria, with 1,530 deaths per 100,000 inhabitants, while the European average is 1,036 deaths/100,000 inhabitants. Cardiovascular and cerebrovascular diseases are the main cause of death. Although Romania has the lowest obesity rate in the EU at 9.1%, the rates among adolescents have more than doubled in the past decade.

UK (England) – Professor Dame Sally Davies, England’s Chief Medical Officer is considering recommending a tax on unhealthy food to persuade parents to buy more fresh fruit and vegetables. Tasked with urgently reviewing what more can be done to meet the government’s target of halving childhood obesity by 2030, ideas put forward include a tax on added sugar in baby food and on high-calorie food such as cakes and pizzas. The food industry, however, has always affirmed that taxes would not change consumer behaviour.

A tax on sugary drinks was introduced to the UK in April 2019 and has raised GBP 154 million.
Following research linking ultra-processed foods - such as chicken nuggets, ice cream and breakfast cereals - to poor health and early death, Dame Sally said they could be targeted in her review. And based on the success of the tax on sugary drinks introduced in April 2018, she said fiscal measures could be used in other ways to help families live healthier lives.
*Please contact FH Europe if you have views about these policy approaches ( )

Rare disease update

In the last edition of the e-Flash (April 2019), we reported that the European Medicines Agency announced its recommendation to grant a conditional marketing authorisation (CMA) for Waylivra (volanesorsen), the first medicine for the treatment of the genetic lipid disorder familial chylomicronaemia syndrome (FCS).  In May 2019, Akcea Therapeutics and Ionis Pharmaceuticals Inc announced that Waylivra has now received conditional marketing authorisation from the European Commission as an adjunct to diet in adult patients with genetically confirmed FCS and at high risk for pancreatitis, in whom response to diet and triglyceride lowering therapy has been adequate.
As part of the conditional marketing authorization, Akcea and Ionis will conduct a non-interventional post-authorization safety study (PASS) based on a Registry.
Regarding access for patients in Europe, Akcea’s CEO, Paula Soteropoulos advises, “We plan to launch WAYLIVRA in Germany this year followed by additional European countries in 2020.”
It is estimated that there are between 3,000 to 5,000 people living with FCS worldwide, with approximately 1,000 people living with FCS in Europe. Waylivra is an antisense oligonucleotide drug to reduce the production of ApoC-III, a protein that regulates plasma triglycerides. Treatment is by a self-administered, subcutaneous injection in a single-use, prefilled syringe.

Research update – news from the US:

Findings from US research indicate a link between high levels of low-density lipoprotein cholesterol (LDL-C) and the risk of early-onset Alzheimer’s disease. The results, reported by the US scientific journal, JAMA Neurology, were published on 28 May.

The study, funded by Alzheimer’s Research UK, looked at levels of cholesterol in the blood of people with early-onset Alzheimer’s disease and healthy volunteers

Fighting fake news – news from the UK

On 30 July, The Times daily newspaper reported that ‘dubious pieces of health advice are among dozens of claims caught by Facebook’s new UK fact checkers.’ In January 2019, Facebook appointed a charity ‘Full Fact’ to challenge misinformation – out of 96 fact checks published in the first six months of 2019, 59 were given a ‘false’ rating, 19 were noted as a mix of true and untrue, whilst seven were considered to be opinion and six were satire. Only five were said to be true. One false post encouraged heart attack victims to cough ‘repeatedly and very vigorously’ until help arrived – a claim for which the British Heart Foundation says there is no evidence to support it – however the post remains live on Facebook.

The FH Europe network meeting in Budapest in 2017 representatives from Latvia and Italy gave presentations to help member associations identify fake health news and challenge it where possible. Francesco Fuggetta of ANIF, Italy, illustrated with statistics from ‘Censis 2016 Report on Italy’s Social Situation’, the particular groups in society which find their health information on Facebook or the web and the risks this involves. More than 88% of Italians - 93.3% of women - look for health information on the web
Do you know of medial fact checking of e-media in your country? FH Europe would be interested to learn from readers what statistics are available and what fact-checking measures are now in place.


FH EUROPE - New Trustee Appointed

John Reeve of the UK was invited to become a Trustee in spring 2019.  Gunnar Karlsson expressed his desire to step down from the role of Honorary Treasurer and the Trustee Board is pleased to welcome this experienced business consultant, whose financial expertise will ensure a smooth continuation in the role.
John Reeve spent 30 years as a management consultant with Deloitte and was a partner from 1986 until his retirement in 2010. He has held a variety of leadership roles. At the time of his retirement he was Head of Technology Consulting for the Europe, Middle East and Africa region. He has led substantial projects in the UK, Europe, North America, Middle East and the Far East.

John Reeve has a number of charitable interests which include the Academy of Ancient Music, the Lute Society and Meketa a charity which provides livelihood support to destitute families in Northern Ethiopia.


FH Awareness Day 2019: FHchol Austria will host a cholesterol check on September 27, 2019 at a large Viennese pharmacy. FHchol Austria representatives and medical doctors will be present to advise participants with high LDL-cholesterol.
JEM – Journal for Nutritional Medicine: Gabriele Hanauer-Mader was author of an article on FH and the Austrian FH Registry in the June edition of the magazine.
Monthly Journal on Pediatrics „Mitteilungen der ÖGKJ“: Gabriele Hanauer-Mader was author of an article about the FHchol Austria patient organization and the Austrian FH Registry in the June edition of the journal. The journal is sent to all pediatricians in Austria.
Austrian-Swiss Metabolic Meeting – Update in Dyslipidemias and Newborn Screening, Vienna, April 4/5, 2019: G. Hanauer-Mader presented the latest Austrian FH Registry data and talked about the importance of the patient organization
MIGHTY MEDIC Org' 14th Lipid Club and Therapeutic Apheresis - Advanced Course of Clinical Lipidology, Udine, May 29/30, 2019: Upon invitation by Prof. Claudia Stefanutti and Domenico della Gatta, President of the Italian FH patient organization A.N.I.F., Gabriele Hanauer-Mader held a lecture on the importance of FH patient organizations after the important introduction of her Italian counterpart. It was an extremely warm and heartfelt meeting showing once again that FH has „no borders“ and international cooperation is pivotal.


The Finnish Heart Association, Sydanliitto, is planning a major campaign to raise awareness of FH. Medical Director Anna-Mari Hekkala has advised that webinars are being organised and press articles drafted in time for FH Awareness Day on 24th September. Further news will follow in our next edition.


CholCo e.V.
On 14th June, the German FH and lipid disorder patient association Cholco supported Germany’s 17th ‘Cholesterol Day’, organised by the DGFF, Germany’s ‘Lipid League’.
On 13 July, this year’s eighth official annual meeting for CholCo members was held for the first time in the Bavarian capital, Munich, rather than in Frankfurt.
Information evenings to check LDL cholesterol levels - Check dein Herz  took place in Mannheim/Schwetzingen on the evening of 27 June and in Stuttgart on 18 July 2019.


Croí Heart & Stroke charity, located in the West of Ireland, has a Third Age programme and offered free heart health checks to 65+ year olds at its Heart & Stroke Centre in Newcastle, Galway on 19th June, stating that the key to healthy ageing is a healthy heart. It affirmed that many of these conditions, if detected and treated early, can be managed so as to significantly reduce their impact on health and longevity. Croí has noted that by the year 2050, 1 in 5 people worldwide will be over the age of 60 years of age and that in fact for the first time in human history, we are close to a time when across the world there will be more people over the age of 60 than under the age of 15.
As part of its awareness-raising activity on CVD, Croí is running a summer series talk on ‘Top Tips for a Health Heart’ led by the healthcare professionals at Croí House. The free information sessions are open to the public and take place on Friday 26th July and Friday 23rd August


The Fundación Hipercolesterol Familiar (FHF) is making plans for FH Awareness Day on 24th September. In 2018, the Spanish Foundation worked together with the Iberoamerican FH network and they plan to repeat the success of their social network in 2019, alongside a press round table with FH patients with the aim of raising the importance of the FH Detection Plan and other measures, since progress is difficult in light of political changes.

The hashtag for this event will be #DescubreTuFH and FHF in Spain looks forward to exchanging information with other associations regarding activities and awareness-raising on and around 24th September.


FH Sverige appoints a new chair: Anders Ekstedt, a publisher in the medical and technical field, has succeeded Gunnar Karlsson as chair of FH Sverige.

Anders Ekstedt has reported that in Sweden they have now produced a magazine called “Diagnos” to spread knowledge of FH in Sweden to all the GPs there. This supplement is being mailed to all primary care physicians/GPs and will be distributed at the National Primary Care Conference in Gothenburg on 1-2 October.
The supplement contains treatment guidelines for the management of patients with suspected Homozygous or Heterozygous FH. The guidelines, which explain how best to manage suspected cases, was developed by the FH Sverige patient association, in collaboration with the newly formed Swedish Lipid Physicians Association.
The supplement will be uploaded on from the Swedish Medical Association in the near future.


London Marathon fundraising – HEART UK had a cohort of 26 runners supporting FH by raising funds. Each year, over 40,000 runners complete the London Marathon, many of them raising much-needed funds for a wide range of charities.

HEART UK continues to work hard to support the NHS and Public Health England to attain their ambition of identifying 25% of FH cases by 2024, this would mean an 18% increase in cases identified. HEART UK is currently reviewing its FH Toolkit, which offers information to assist healthcare professionals in diagnosing FH patients. HEART UK’s initial focus will emphasise tools to support primary care.

More information from HEART UK may be found on

HEART UK has also produced a radio advert which may be seen on the video clip here

Copyright © 2019 HEART UK - The Cholesterol Charity, All rights reserved.

FH Europe is supported by an educational grant from Amgen Limited, Sanofi, Regeneron, Akcea Therapeutics Inc. and Amryt

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