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News: FH Europe newsletters

FH Europe E-Flash || Spring 2019

Tuesday 2 April 2019  
Posted by: Carmel Hayes
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Spring 2019

FH Europe and European Atherosclerosis Society agree closer cooperation to improve treatment and research for FH

FH Europe and the European Atherosclerosis Society have signed an agreement to collaborate, by linking FH patient groups with expert clinicians from all over the world, with the aim of sharing globally established best practices. This will mean more persons with FH are identified early and, once they are identified, will lead to a smoother pathway for the patient to referral and potentially life-saving medical treatment.
The direct benefits of closer interaction with FHSC’s network of expert clinicians as a result of this collaboration will include interaction at national level so that patient groups and clinicians will work together to establish and optimise communication and medical referral processes. In this way, once diagnosed, FH patients should quickly receive all the information, support and treatment they and their families need.

87th EAS Congress in Maastricht – 26th-29th May 2019

The 87th EAS Congress will be held in the Dutch city of Maastricht on 26th to 29th May. The EAS FH-Studies Collaboration (FHSC) will hold a getting to know you session on the morning of Sunday, 26th May at which FH Europe Trustee representatives Gabriele Hanauer-Mader and Inese  Maurina will have the opportunity to meet FHSC Investigative Leads from a wide range of countries. FH Europe representatives who are attending the Congress have been cordially invited to join in this event. The satellite symposia which take place on the margins of the Congress include the third EAS FH Paediatric Symposium which has been jointly organised by Dr Albert Wiegman and Dr Jeanine Roeters van Lenne. Dr Wiegman gave a well-received presentation to FH Europe members at the Paris network meeting in November 2018.

On the final day of the EAS Congress, the FHSC will hold its Steering Committee meeting, which provides an opportunity for experts in the field to review progress. FH Europe has been invited to make a presentation to the Steering Committee meeting on public and patient involvement in FH. 


Rare disease update:

The European Commission is currently consulting on a guideline for orphan medical products designation. The consultation will be open until 28 April 2019. The guideline aims to provide additional advice to assist sponsors when they apply for orphan medicinal designation. The European Commission website contains information on how it provides support in the field of rare diseases:

February - Rare Disease Day 2019:

Since 2008, the last day of February marks Rare Disease Day. EURORDIS-Rare Diseases Europe is a non-profit alliance of 837 rare disease patient organisations from 70 countries. Eurordis ( organised events all round Europe to raise awareness of the challenges faced by 30 million people living with a rare disease in Europe.

Diary date: Eurordis will hold its 2019 Membership meeting in Bucharest on 17-18 May.

Individuals with familial chylomicronaemia syndrome (FCS) also marked Rare Disease Day:

On the following day – 1st March 2019 – the European Medicines Agency announced its recommendation to grant a conditional marketing authorisation (CMA) for Waylivre (volanesorsen), the first medicine for the treatment of the genetic lipid disorder familial chylomicronaemia syndrome (FCS), which was granted an orphan designation (i.e. affecting fewer than 1 in 100,000 persons) in the EU in February 2014. At the time of approval, orphan designation will be reviewed by the EMA Committee for Orphan Medicinal Products (COMP) to determine whether the information available to date allows this orphan status to be maintained and grant the medicine ten years of exclusivity. The opinion will be sent to the European Commission for adoption of a decision on an EU-wide marketing authorisation. Once this has been granted, each EU Member State will make decisions about price and reimbursement, taking into account the potential role or use of this treatment within its own national health system. -



Gabriele Hanauer-Mader reports that FH and lipid disorders have been featuring on Austria’s television channels. On 22 January on ‘Studio 2’, a new early evening programme on the Austrian ORF 2 channel the weekly medical topic was Familial Hypercholesterolaemia. This included a patient interview and a live studio guest – Professor Thomas Stulnig whose expertise includes atherosclerosis and cardio metabolic disease.
On Wednesday, 6 February the Austrian ORF III channel’s programme ‘Meryn’s Sprechzimmer’ (Meryn’s consulting room) held a discussion on ‘Cholesterol and blood pressure – the silent killers’ with two medical specialists – Professor Peter Siostrzonek and Professor Dieter Magometschnigg and patient representative Gabriele Hanauer-Mader.
On Friday, 22 February a further broadcast was shown on ORF 2 prime time on the ‘Konkret’ programme on raised Lipoprotein(a) [Lp(a)]. In the feature on ‘having a say’ there was an emotional testimonial from a patient with Lp(a) who had suffered a heart attack and also contributions from Professor Florian Kronenberg and Professor Christoph Ebenbichler, with Lp(a) and apheresis expert Professor Kurt Derfler as live guest in the studio. 
FH was also the topic in the February edition of the monthly magazine “ORF Nachlese”. A focus on Lp(a) will be given in the monthly magazine “Österreichische Ärztewoche” reaching all GPs across Austria.


Cholco (Cholesterin & Co e.V), the Germany FH patient association, has now published its children’s brochure ‘Lena has FH’ (Lena hat Familiäre Hypercholesterolinämie) in Turkish and Italian (
Cholco became a member of Eurordis in December 2019.


Croí, the heart and stroke association based in the West of Ireland, was one of 35 patient organisations to sign a Charter calling upon three national agencies in Ireland - the Irish Department of Health, the Health Service Executive (HSE) and the National Centre for Pharmacoeconomics (NCPE) – to consider the process of assessing and reimbursing new medicines in Ireland and how this can be improved.

The Charter was coordinated by the Irish Platform for Patient Organisations, Science and Industry (IPPOSI) with the support of the Medical Research Charities Group and Rare Disease Ireland.

More information on:


FH Europe has been in contact with volunteers in the medical profession in Malta who are eager to ensure support for FH patients. The effectiveness of networking has been proven following a recent contact via the HEART UK and FH Europe websites. A resident in Malta has now been invited for medical review following a CVD event whose cause is believed to be related to high cholesterol levels.


Fundación Hipercolesterolemia Familiar, the Spanish FH association, reports that a pioneering study conducted by Spanish and Australian investigators with data from the Spanish SAFEHEART study, has for the first time described the value of measurement of Lipoprotein(a) [Lp(a)] during cascade screening for the detection of Familial Hypercholesterolaemia Journal American College of Cardiology 2019;73:1029-39 andFundación HF

Spain’s Senate recently unanimously approved a paper on genomics and precision medicine. This approval signifies an important strategic agreement for the health system and for patients and is seen as part of a global health strategy which integrates different scientific and technical advances. (Published on 13 February 2019 in the Boletín Oficial de las Cortes Generales del Senado y Fundación HF (páginas 47-50))

(An EU Horizon-funded research programme provides information on the precision medicine sector in Spain and explains that a new approach requires differently trained health professionals and a new type of relationship between doctors and patients as patients will need to be made aware of how to understand complex information that will guide their choices among different options.)


On 14 February 2019, a group with the rather lengthy name of the ‘National Cardiovascular Disease Prevention System Leadership Forum’, a coalition led by Public Health England, published some ambitions regarding the NHS Health Check, ensuring more people take it up, and targeting identification of 25% of people with FH by 2024. The NHS long-term plan, which outlines NHS long-term commitments was published on 7 January 2019 and includes the aim that 25% of people with FH will be identified through the NHS genomics programme by 2024. The Plan’s ambition is that people will routinely know their atrial fibrillation (AF), blood pressure and cholesterol levels with the help of digital technology.

HEART UK was instrumental in promoting the inclusion of FH in the NHS Plan and is now working on ways to support its delivery.
Statin Benefits in the Elderly: New Meta-Analysis 
Statins reduce vascular events in all age groups, including people older than 75 years, according to the results of a new meta-analysis from the Cholesterol Treatment Trialists' Collaboration.
Source: The Lancet

Statins and ‘fake news’: On 3 March, the UK’s ‘Mail on Sunday’ newspaper, featured statins in its campaign to fight ‘fake’ claims about proven medicines - Daily Mail Article 1

UK Health Minister, Matt Hancock has also commented in support, affirming that statins save lives and accusing statin deniers of risking people’s lives needlessly - Daily Mail Article 2

FH Europe members regularly discuss actions to promote accurate health information and presentations on health news and the web and on fake news in health were made to members at the FH Europe Annual Network meeting in Budapest in November 2017 and recorded for member training.

Following the creation of a Members Area on the website, FH Europe member associations are now able to access all recorded material from meetings and also a growing range of training resources which should prove invaluable in improving e-media and influencing skills at national level.

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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