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News: FH Europe newsletters

FH Europe E-Flash || October 2019

Tuesday 5 November 2019   (0 Comments)
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FH EUROPE E-FLASH
October 2019

FH Europe marks the death of a founding member of the network


It came as a great shock to members of the FH Europe network and her friends and colleagues worldwide to learn of the sudden death of Gabriele (Gaby) Hanauer-Mader on Wednesday, 21 August. It is still hard for her many friends, colleagues and associates to accept that such a lively and vibrant presence on the international FH scene is no longer with us.
On Wednesday 18 September, a church service was held in Perchtelsdorf attended by family and friends. On behalf of FH Europe and its Trustee Board, Inese Maurina of ParSirdi.lv attended the funeral and wrote to us the following day.

“Yesterday, together with Thanos Pallidis of the Greek Patient Association, I attended the commemoration ceremony of our colleague and friend Gaby Hanauer-Mader in Perchtelsdorf, a suburb of Vienna. It was an opportunity to meet Gaby's relatives and colleagues once again to celebrate her life and contribution to the promotion of family hypercholesterolemia in Austria and across Europe.

As both her relatives, her friend and co-workers acknowledged at the event, she was not only a smart and intelligent woman who achieved much in her career, but also an inspiring person, who devoted much of her time, love and energy to those around her. Her work continues to live in the patient organisations, her sincere smile and heart-warming attitude will always stay in our minds and in our hearts.”

Our tribute to Gaby appears on the FH Europe website: https://fheurope.org/latest-news/tribute-to-gabriele-hanauer-mader/

Europe-wide awareness-raising for FH


Familial hypercholesterolaemia is a genetic disorder found in countries all around the globe and yet, despite recent advances in treatment, in some countries less than 1% of individuals with FH have been identified.

Many patient associations have their own national ‘days’, ‘weeks’ or ‘months’ in which they raise awareness of the risks of high cholesterol, FH and related disorders. Shared messaging and media activity on or around 24 September, a date initiated in 2012 by the FH Foundation in the United States, highlight the worldwide nature of this disorder and activities such as cholesterol testing help find a practical solution to locating individuals with this disorder.

FH Europe posted a variety of information on e-media and shared member activities on Facebook and also Twitter.
 

The European Atherosclerosis Society’s FH Studies Collaboration (EAS-FHSC) held its FH week from 23 to 29 September and issued a series of newsletters to EAS members and stakeholders and FH-related information was published daily on its social media - Facebook @EuropeanAtherosclerosisSociety and on Twitter: FH global registry @fhglobal.

https://www.eas-society.org/page/fh_week_2019

In this extended edition, our news from the network celebrates the work of volunteers around Europe network.

World Heart Day 2019 – 29 September - calls for us all to be ‘Heart Heroes’


On #WorldHeartDay the World Heart Federation has called for ‘heart heroes’ to help ensure a reduction in the 17.9 million deaths per year from cardiovascular disease
  • a promise to cook and eat more healthily
  • a promise to our children to exercise more and help them to be more active, to say no to smoking and help our loved ones to stop
  • a promise as a healthcare professional to help patients to give up smoking and lower their cholesterol
  • a promise as a policymaker to support policies that promote healthy hearts
  • a promise as an employee to invest in heart-healthy workplace
More information on https://www.world-heart-federation.org/world-heart-day/world-heart-day-2019/

Follow up on the FH Global Call to Action


This will be discussed at the FH Europe Annual Network meeting on 2 and 3 November. Inese Maurina of the FH Europe Trustee Board attended the meeting of the FH Foundation in Atlanta, Georgia in October. A meeting immediately after the FH Foundation Conference discussed the current call. The e-Flash will report on events and actions as soon as possible. 

NEWS FROM THE NETWORK

Liaison with other associations

On 9 May 2019, FH Europe and members of its network from France, Sweden and Ireland were represented at a pan-European Roundtable meeting organised by PACT (Patient Access for Treatment) and EAfPA (European Alliance for Patient Access). The topic of ‘Increasing Patient Empowerment: Preventing Premature Cardiovascular Death or Disability’ brought together representatives of various associations that support patients in and around Europe.

A further meeting was held in Brussels on 12 September where Professor John Chapman presented the new ESC Dyslipidaemia Guidelines and associations from around Europe discussed the benefits of having a portal to share ‘user friendly’ factsheets on CVD and diabetes that could empower patients when dealing with both primary and secondary care providers.

AUSTRIA

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.

CZECH REPUBLIC

Kristyna Cillikova of Diagnoza FH has informed us of their association’s achievements in their fourth FH Awareness Week, which was held in memory of Gabriele Hanauer-Mader.
  • A total 590 persons received a check-up (total cholesterol, LDL-c, HDL-c, TG, blood glucose in 50 %)
  • 13 persons were sent to the clinic centre for a detailed check-up
  • 6 possible FH cases detected
  • two 90-minute lectures were delivered about FH, atherosclerosis and diet 
  • 32 hours of individual education about cardiovascular risk, prevention and diet
  • Our clients: The Trebic Hospital in Trebic (Open Day in Your Hospital), House of Commons of the Czech Republic, Prague, Novartis Pharma, Prague, The Masaryk University in Brno, Department of Laboratory Methods.
In addition, Prague’s historic Café Louvre was the venue for a FH Awareness-Day conference including the new EAS/ESC guidelines for dyslipidaemias

FINLAND

The Finnish Heart Association, Sydanliitto, has undertaken a major campaign to raise awareness of FH - Campaign page: https://sydan.fi/fh
  • Over a two-week period, which ended on 24th September, a 30-second radio commercial on local radio stations all around Finland advised listeners to take a quick and easy FH-test that indicates whether or not a person has a high risk of having FH.
  • Banners on the sydan.fi website issued a call-to-action to take the test “Test your own risk to have FH”: sydan.fi/testi/fh-testi and to join the Sydanliitto webinar
  • The association hosted a FH-webinar on FH-day which could be accessed via the campaign website (https://sydan.fi/fh). Speakers were Sydanliitto’s Medical Director Anna-Mari Hekkala and Emerita Professor Marja-Riitta Taskinen
  • Media and e-media played a part  in the campaign, with several Facebook- and Twitter-posts, a press release Article on Iltalehti and FH related articles on four different professional medical journals: for nurses, cardiologists, general practitioners and occupational health physicians written by Anna-Mari Hekkala
  • There was a FH-interview on national broadcast channel (YLE) morning programme YLE aamu-TV  with Emerita Professor Marja-Riitta Taskinen and Cardiologist Anna-Mari Hekkala from the Heart Association.

FRANCE

French national association for FH patients, Anhet, celebrated its second anniversary on 21 September 2019 in the French city of Marseilles. The programme for the day is set out below. Presentations include developments in treatment in a French region, the importance of screening and treatment for children, the importance of existing treatments for FH such as statins and PCSK9 inhibitors as well as future developments, economic factors in relation to different treatments and science denial in contemporary society.

GERMANY

Cholesterin & Co e.V.  (‘CholCo’)
Cholco invited people to join a FH ‘information run’ (Aufklaerungslauf) by the Starnberg lake near Munich on 26 September and also a similar event in Frankfurt, providing the opportunity for people to raise awareness of FH.

HUNGARY

In late August, the SZIVSN announced that after considerable action regarding treatment for FH, Prof Dr Ildiko Horvath, Secretary of State held a meeting with Zsuzsa Bernath-Lukacs of SZIVSN and the head of the FH Group, Dr Akos Gasztes. Until PCSK9 inhibitors have been approved for regular reimbursement, the products are already available to patients with the highest risk on an individual named patient basis, with submitted applications being assessed positively if particularly eligibility criteria set by NEAK, Hungary’s National Health Insurance Fund are met. 

Some 20 patients can now receive PCSK9 inhibitors, with approvals set to grow in coming months.

IRELAND

Croi opened its autumn series of Friday free information sessions ‘Top Tips for a Healthy Heart’ on Friday 27th September. It has also actively promoted #WorldHeartDay on 29 September with a variety of fund-raising activities.

ITALY : A.N.I.F

In the shadow of the San Giovanni Basilica, in the Antonianum Auditorium in Rome, A.N.I.F. (Italian national association for Familial Hypercholesterolaemia) held a seminar to raise awareness of Familial Hypercholesterolaemia, with live streaming available.

A video review of the seminar is available: https://www.youtube.com/watch?v=a5UibYlO_30&feature=youtu.be

ITALY : G.I.P - FH

Gloria Hastings reported that G.I.P-FH planned a major campaign for FH Awareness week. An Internet campaign on the website included newsletters containing messages and pictures - one for every day of the week http://www.gip-fh.it/index.php?class=Comp&className=Content&op=Show¶m=cid,129,preview,0

They also distributed brochures and information in many chemists and doctors surgeries throughout the country. “An important meeting was also arranged for the 27th September in Rome, but unfortunately has now been postponed until a later date, but there will be other initiatives to raise Awareness to our cause” she concluded.

LATVIA

ParSirdi celebrated FH Awareness Week with a heart day at the port city of Liepaja in Western Latvia. In the picture below are Gunar Ansins of Liepaja (left) and ParSirdi head Inese Maurina (second from right).  

POLAND

Polish FH organisation Stowarzyszenie Pacjentów z Hiperlipidemią Rodzinną w Gdańsku wrote of their FH Awareness Day seminar: “In her emotional speech, our chairman shared her dream:

‘Everyone with FH should be diagnosed, that is our dream. To make that dream come true we run many educational campaigns. One of our goals is an access to reliable, true information, especially in times of many fake, harmful news [items].’

Next, the people who laid the foundation for our FH clinic presented, among others, the 20-year history of our first out-patient clinic for FH patients in Poland and underlined the needs and expectations of today’s FH patient. The necessity of children’s screening towards FH was addressed. 

After the set of lectures, the participants were invited to a dietary workshop and lipid measurements. After the main events patients, dietitians and doctors involved in creating the National FH Centre in Gdansk shared their thoughts over a healthy meal. In addition to the knowledge and positive feedback, everyone received a voucher for a low-fat lunch in a vegan restaurant.”
The Polish FH association was also present at the ‘Race for the Cure’, a 5km run held in Gdansk on 26 September 2019, with 1,631 participants. The race was organised by the OmeaLife Foundation, created by four women who had faced breast cancer and sought to give hope to others. A similar run took place in 16 other European cities at the same time. Women facing breast cancer ran in pink tee-shirts, all others wore white.

The FH association organised a stand and conducted lipid measurements, followed by consultations with a cardiologist. During the event, they examined over 200 people, some of whom were referred to National FH Centre.

PORTUGAL

The Associaçao Portuguesa de Hipercolestrolemia Familiar, FH Portugal posted health information and items on social media, including an in-depth interview with FH Portugal’s President, Dr Isabel Mendes Gaspar entitled Saúde em jogo – Hipercolestrolemia Familiar (Health at risk - familial hypercholesterolaemia) – the video is easily accessible via https://www.facebook.com/FhPortugal/
 
The FH Portugal presented information on FH, including a questionnaire:
https://fhportugal.pt/24-de-setembro-dia-colesterol-hereditario/ 
 

SPAIN

The Fundación Hipercolesterol Familiar (FHF) repeated the success of its 2018 social network collaboration with the Iberoamerican FH network in 2019 (#RedHF), alongside a press round table with FH patients to raise the importance of the FH Detection Plan and other measures, since progress is difficult in light of political changes.

In association with the South American network, an online questionnaire (in Spanish language) set out six general questions relating to FH and provided information on the disorder and treatment: https://fhawareness.typeform.com/to/feLWEF

The Fundacion’s website https://www.colesterolfamiliar.org also provided access to the Safeheart study’s app to calculate cardiovascular risk.

Using the hashtag #DescubreTuFH for this event, FHF in Spain exchanged information with other associations regarding activities and awareness-raising on and around 24 September.

SWEDEN

The Swedish association has published a status report (Vägen till mållet – The path to the goal) based on its annual survey of the number of patients diagnosed and treated in Sweden’s 21 regions – the goal is that 80% of FH patients are diagnosed no later than 2025

http://www.fhsverige.se/wp-content/uploads/2019/09/Vägen-till-målet-2019_FINAL.pdf
 

SWITZERLAND

SGFH, the Swiss FH Foundation has run an interview on its website (German language) with SGFH director, Professor Andre Miserez to explain what FH is and to publicise its October symposium held in Basel on Thursday 17 October from 2.00 – 6.00 p.m.

www.sgfh.ch/was-ist-fh/uber-die-krankheit/fragen-zur-sgfh-interview/
 

U.K.

HEART U.K. launched a video on FH for FH Awareness Day and World Heart Day https://www.facebook.com/heartukcharity/videos/vb.155036791190427/1108254146031560/?type=2&theater
 
Management of children and young people with heterozygous familial hypercholesterolaemia
 
The HEART UK Statement of Care for management of children and young people has been published in Atherosclerosis journal – vol. 290, Nov 2019 pp. 1-8 https://www.sciencedirect.com/science/article/pii/S0021915019314790 
 
HEART UK has a ‘cholesterol month’ in October, following on immediately from Actions for 2019 and will be reported in the post-Bucharest meeting e-Flash.

U.S.A

The originators of FH Awareness Day, the American FH Foundation, conducted another ‘tweet-a-thon’ which generated 3,000 tweets and reached 6 million people.  This contributed to the overall reach during the month of September of 15 million people. 

NEWS FROM THE EU

Heart attacks cited as being responsible for 15% of preventable deaths in Europe in 2016


A report published by Eurostat on 9 September indicated that in 2016, the deaths of 1.2 million Europeans under 75 were considered premature and could have been prevented (through “effective interventions in the field of public health and primary prevention”. According to the report, around 741,000 of these could have been prevented, whilst 422,000 could have been treated with timely and effective intervention.

Tracheal, bronchial and lung cancers account for 168,000 deaths (14% of preventable deaths).Heart attacks account for 174,000 preventable deaths, or 15% of all preventable deaths in 2016. - www.euractiv.com/ https://www.ouest-france.fr
 
In the EU, almost 49 million people live with cardiovascular disease – almost every tenth person. It has been calculated the economic consequences of cardiovascular disease on society are almost 210 billion euros a year. EU Health and Food Safety Commissioner Vytenis Andriukaitis issued a statement on CVD issues for World Heart Day https://europa.eu/rapid/press-release_STATEMENT-19-5898_en.htm

Continuing education resource for healthcare professionals regarding PCSK9

 
The PCSK9 Forum provides information on the effect of inhibition of PCSK9 in lowering serum LDL-cholesterol levels beyond the effects of current therapies. The PCSK9 Forum offers healthcare professionals access to independent analysis and news from internationally recognised researchers and clinicians.

In the run-up to autumn 2019 campaigns for awareness-raising of heart disease and familial hypercholesterolaemia, the Forum encouraged registered healthcare professionals to download their slide resources, looking at FOURIER and ODYSSEY OUTCOMES studies.

https://www.pcsk9forum.org/continuing-professional-education-at-pcsk9-forum-slide-resource-programme/

Paediatric screening


 The FH Europe network follows with interest measures for early identification and treatment of individuals with FH. In the 2016 meeting, representatives were intrigued to learn of the work of Professor David Wald. Two years later, in the Paris meeting, Professor Albert Wiegman of the Academisch Medisch Centrum (AMC) of Amsterdam outlined the experience of the Dutch paediatric screening project which ran over two decades with interesting and beneficial results.
 
The outcome of the project has now been published in an article entitled “20-Year Follow-up of Statins in Children with Familial Hypercholesterolemia”. The study has concluded that “initiation of statin therapy during childhood in patients with familial hypercholesterolemia slowed the progression of carotid intima–media thickness and reduced the risk of cardiovascular disease in adulthood”.

Reference: New England Journal of Medicine 381;16 nejm.org October 17, 2019

USA:


JAMA Cardiology, (a Journal of the American Medical Association) reported in May 2019 on a cohort study ‘Identifying Familial Hypercholesterolemia using a blood donor screening program with more than 1 million volunteer donors’ to estimate the prevalence of familial hypercholesterolaemia in a population of blood donors.

The authors concluded that the blood donor screening program could be a novel strategy to detect and notify individuals with potential familial hypercholesterolaemia, particularly younger individuals in whom early detection and treatment is especially helpful, in addition to its role in guiding cascade screening.

Ref: JAMA Cardiol. 2019;4(7):685-689. doi:10.1001/jamacardio.2019.1518

Benefits of taking statins - UK


On 31st July 2019, The Times newspaper noted that “Taking statins after 75 ‘nearly halves risk of heart attack’”. Reporting on a French study, it advised that taking drugs into old age could also reduce the risk of a stroke by a quarter, according to the first study to focus on what happens when people aged 75 stop using statins.

https://www.thetimes.co.uk/article/581678da-b318-11e9-976e-8c6a49598911

U.S. study indicates link between low-density lipoprotein cholesterol (LDL-C) and risk of early-onset Alzheimer’s disease


The scientific journal JAMA Neurology published findings in late May which looked at levels of cholesterol in the blood of people with early-onset Alzheimer’s disease and healthy volunteers. Alzheimer’s Research UK is currently funding research into how cholesterol may contribute to Alzheimer’s and whether drugs might be able to tackle these processes. Study findings were published on 28 May 2019

https://www.alzheimersresearchuk.org/gene-associated-with-bad-cholesterol-linked-to-early-onset-alzheimers-disease/
 
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