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FH Week 2020


Through the power of a global network of lipid clinics and the largest population FH dataset ever assembled, FH Studies Collaboration (FHSC) is the engine room that will deliver quality metrics, informing measures addressing the gaps in detection, treatment and outcomes, and driving improvement in standards of care for FH patients globally.

With our 2020 FH Week campaign we update on the FHSC’s activities and progress, as well as joining with the FH community to raise awareness of the condition on FH Awareness day, September 24th, 2020. Follow us on social media and share the FH related information within your network using #FHWeek, #FHaware2020 and #FindFH.

About FH and the EAS FH Studies Collaboration

Familial hypercholesterolaemia (FH) continues to be a major global health problem. Worldwide, one in every 200‑500 people has FH — yet FH remains widely under-diagnosed and under-treated. The consequences of FH in the form of premature atherosclerosis and cardiovascular events are potentially preventable, but require effective initiatives and policies to address the current issues and reduce the burden of disease. The EAS FH Studies Collaboration (EAS FHSC) was launched in 2015, to collect and study data from FH clinics worldwide. Since then, investigators from all over the world have joined the collaboration and contributed data on their FH patients to a global registry. Analyses of the pooled and harmonised data will inform scientific discussion about effective global action for early detection of FH, and effective management and treatment of FH patients. 

Today the FHSC Global Registry has approximately 62.5K cases (including over 8,500 children) registered from 63 contributing countries thus far. The initiative continues to receive new cases and is expanding to other countries. The collaboration currently involves 90 Lead Investigators from 68 countries.

How the registry is set up and what we expect to learn >>

Key publications

A global network with local knowledge - showcasing national FH activities and publications

Through the network, the FHSC supports national coordinating centres who are working in individual countries to implement treatment strategies according to specific country needs, with the ultimate aim of reducing the global burden associated with FH. During FH Week, we'd like to highlight the successful activities and publications that result from these efforts.   
     

Read about national updates and contributions to FH Week 2020 >>

Working together increased awareness and policy change

EAS participated in an international coalition convened by the FH Foundation and the World Heart Federation to reexamine and update key recommendations issued by the World Health Organization (WHO) in their Report on Familial Hypercholesterolemia in 1998.  In the more than 20 years since that report, few of these recommendations have been systematically implemented on a country-by-country basis, leaving 9 out of 10 people born with FH undiagnosed.  This resulted in the publication of a Global Call to Action to tackle the global burden of Familial Hypercholesterolaemia (FH).

Global Call to Action on FH - summary >>

Partnership with FH Europe - once voice in Europe on FH

EAS-FHSC works in partnership with FH Europe, the European network for FH patients and their families. Cooperation between our two networks helps connect FH patient groups with expert clinicians, and means we can join forces in communicating, and sharing resources.      
 Read more about the EAS-FHSC & FH Europe partnership >>
#FHaware2020 – multi-stakeholder collaboration >>
   

FH Europe and patient groups in the network are raising awareness of FH through activities including:


  The 9 actionable recommendations listed in the Global call to action, have been converted into interactive cards to highlight the importance of acting collaboratively now so we stop premature cardiovascular disease tomorrow.
A Global Call to Action Interactive Cards >>
     
 

"FH made easy” is an educational project, with the main objective to raise awareness and to educate the young generation of healthcare professionals about Familial Hypercholesterolemia, proper diagnosis, treatment and risk factors. Read more about the educational collaboration >>


Follow FH Europe in social media and share information within your network using #FHaware2020 and #FindFH.

FHSC Investigators presenting at the EAS Virtual Congress 2020

Research and studies into many aspects of FH are an important area of discussion for our scientific community. Some collaborators from the FHSC will present as part of EAS 2020 virtual Congress. Details below. Registration to attend the virtual Congress is free, and should be done in advance. Register now >>

Lipid lowering therapies from childhood to old age

This virtual session is included in the Track: Prevention and Treatment of CVD
Time: 10:00- 11:13 CET on Tuesday October 6, 2020. The session is chaired by Prof Steve E. Humphries, and includes the following presentations:
  • Treating primary dyslipidemia in children: what we’ve learned from treating patients with Familial Hypercholesterolemia, by Marina Cuchel

  • Eligibility for intensive lipid lowering therapies in secondary prevention of premature myocardial infarction according to ACC/AHA 2018 Cholesterol Guideline, by Michel Zeitouni

  • Lipid lowering therapy in primary and secondary prevention across Europe: are LDL-C goals achieved? Results from the DA VINCI study, by Kausik Ray

  • Characteristics of Adults with Heterozygous Familial Hypercholesterolaemia stratified by gender: Preliminary analysis from the EAS FHSC Global Registry on over 36,000 cases of Familial Hypercholesterolaemia, by Antonio J. Vallejo-Vaz

  • Statin-associated muscle symptoms in the PROSISA study: prevalence and risk factors, by Federica Bonaiti 


Heterozygous Familial Hypercholesterolaemia in Children: Preliminary analysis from the EAS FHSC Global Registry on over 7,900 children with Familial Hypercholesterolaemia
These findings are presented by Kanika S. Dharmayat as a poster 
presentation at 13:00- 14:00 CET Tuesday October 6.

EAS 2020 Congress scientific programme overview - find more presentations on FH >>

Register for the congress at no charge >>

Education, resources and tools

Find all EAS Consensus Papers on FH, reports from the EAS FH Studies Collaboration, editorials and commentaries on EAS FH related publications and activities.             

Find more educational content here >>

 

EAS FH Events

EAS recent and forthcoming FH-related events >>

 

#FHWeek - Join with us in sharing information about FH

 

During FH Week, a series of newsletters are going out to EAS members and stakeholders and FH related information is published daily in our social media channels. Follow us and share the information within your network. You find us on Facebook: @EuropeanAtherosclerosisSociety and on Twitter: FH global registry @fhglobal.

 

In our Youtube channel (European Atherosclerosis Society) you can find several video interviews with EAS FHSC Scientific Leads describing the EAS FH Studies Collaboration Registry and the National Lead Investigators and patient organisation representatives describing the situation in their respective country/region.

Read more about the collaboration >>

 

MORE ABOUT EAS AND FH

REPORTS AND INTERVIEWS

FH STUDIES COLLABORATION - A worldwide network on FH

FHSC - REGISTRY

FIND A FH CONTACT IN YOUR COUNTRY

SPECIAL CLINIC - REFERRAL CENTERS; Genetic testing for FH

FHSC COLLABORATION WITH FH EUROPE (Patient organisation network)

HICCS REGISTRY

FH WEEK 2020 NEWSLETTERS (Starting on September 21) 

PUBLICATIONS

 

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