Developing networks for rare cardiovascular disease in Europe !Alida LP Caforio, MD, PhD, FESC

Chairperson ESC Working Group on Myocardial and Pericardial Diseases

Dept of Cardiological Thoracic & Vascular Sciences

Speaker

Disclosures

• no financial relationships to disclose

Rare cardiovascular disease (RCD): size of the problem

Rare diseases: definition

Prevalence: • ≤5 cases/10,000 inhabitants1

(≤ 1:2000) • European Union definition

• ~8 cases/10,000 inhabitants2,3 (~1:1250) • USA Congress definition

!

1. Commission of the European Communities, 2008; 2. United States Congress, 2002; 3. Blankart et al. Orphanet Journal of Rare Diseases 2013, 8:32

Rare diseases: size of the problem

• Over 5000 diseases:1 • 10% of all human diseases !

• 25 million USA patients2 • 29 million European patients1 !!!

1. Commission of the European Communities, 2008; 2. United States Congress, 2002.

Rare diseases: the medical challenge

• Rare disease: difficult diagnosis, lack of medical expertise, long time to ascertain diagnosis

• Need for high specialty centers with multidisciplinary approach

• Increase awareness among primary care physicians

• Set-up national and international networks among high specialty centers

• Funding international collaborative projects !

van Weely S. and Leufkens HGM. In: Priority medicines for Europe and the World - a public health approach to innovation. Edited by Kaplan W, and Laing R. World Health Organization, Geneva. 2013.

Rare inherited diseases: the medical challenge

• Rare disease: often genetic in nature • Need for genetic disease in the

proband • Need for cascade genetic screening in

relatives of probands with causative gene mutations

• Potential for aetiology-driven therapy

European Organisation for Rare Diseases. 2005.

Speaker

1. Infectious and parasitic RD (cod.ICD9-CM from 001 to139) – RA 2. Tumours (cod.ICD9-CM da 140 a 239) – RB 3. Endocrine, nutritional, metabolic, immunological RD (cod.ICD9-CM

from 240 to 279) – RC 4. Blood and hemopoietic system RD (cod.ICD9-CM from 280 to 289) 6. CNS and sensorial system RD (cod.ICD9-CM from 320 to389) – RF 7. Circulatory system RD (cod.ICD9-CM from 390 to 459) – RG 9. GI system (cod.ICD9-CM from 520 to 579) – RI 10. Genito-urinary system (cod.ICD9-CM from 580 to 629) – RJ 12. Dermatologic RD (cod.ICD9-CM from 680 to 709) – RL 13. Osteo-muscular and connective tissue RD (cod.ICD9-CM from 710 to

739) – RM 14. Congenital defects (cod.ICD9-CM from 740 to 759) – RN 15. Perinatal congenital defects (cod.ICD9-CM from 760 to 779) – RP 16. Miscellaneous (cod.ICD9-CM from 780 to 799) - RQ

Rare diseases RD list (cost covered by the NHS in Italy):Index

Decreto Ministeriale 18 maggio 2001, n.279

Speaker

RD, Italy, 2008 7. Circulatory system

Disease (Eponyms) RG0010 Rheumatic endocarditis RG0020 Microscopic polyangiitis RG0030 Polyarteritis nodosa RG0050 Eosinophilic granulomatosis with polyangiitis (Churg-Strauss

Syndrome) RG0060 Goodpasture Syndrome RG0070 Wegener Granulomatosis RGG080 Giant cell arteritis (Horton disease) RGG010 Thrombotic microangiopathies (Moschowitz syndrome ) RGG020 Primary chronic Limphoedema RGG090 Takayasu disease RGG100 Hereditary Hemorrhagic Telangiectasia (Rendu-Osler-

Weber disease) RG0110 Budd-Chiari Syndrome RG0120 Idiopathic pulmonary arterial hypertension

Cod. ICD9-CM from 390 to 459 - RG

Italian Ministry of Health. Decreto Ministeriale. 2001:n. 279; National Center for Health Statistics. 2002. Available at: ftp://ftp.cdc.gov/pub/Health_Statistics/NCHS/Publications/ICD9-CM/2002 Accessed: 9 April 2015.

Speaker

Recognised rare cardiomyopathies (CM) (RD list, Italy)• Lipid storage disorders (Fabry, Gaucher,

Niemann Pick disease): hypertrophic CM • Hereditary iron overload disorders

(Hemochromatosis): Hypertrophic/dilated CM • Primary and hereditary amiloidosis:

hypertrophic/restrictive CM • Dystrophinopathies (Becker, Duchenne): dilated

CM • Myotonic muscular dystrophies (Steinert):

hypertrophic or dilated CM CM=cardiomyopathy; RD=rare disease. Italian Ministry of Health. Decreto Ministeriale. 2001:n. 279.

Recognised congenital anomalies (RD, Italy)

•Down syndrome •Cri Du Chat syndrome •Turner syndrome •Klinefelter syndrome !

Decreto Ministeriale 18 maggio 2001, n.279

Speaker

Recognised congenital syndromic defects (RD, Italy)•Apert syndrome •Cardio-Facial-Cutaneous syndrome •Cornelia de Lange syndrome •Holt-Oram syndrome •Ivemark syndrome •Kartagener syndrome •Leopard syndrome •Marfan syndrome •Noonan syndrome •Tuberous sclerosis •Williams syndrome !

Decreto Ministeriale 18 maggio 2001, n.279

Hereditary rare syndromic malformations with associated congenital cardiac defects (CCD)

Incidence of CCD

Malformations

Apert 10% Ventricular septal defect (VSD),Fallot tetralogy, Coarctation

of the aorta (CoA)Holt Oram 50% Atrial septal defect (ASD),VSD

Leopard 50% Pulmonary valve stenosis (PS), long PR

Marfan 60% Aortic and mitral valve malformations

Noonan 50% PS, ASD

“New” Rare Cardiomyopathies • Familial dilated CM • Non sarcomeric hypertrophic CM • Restrictive CM • Arrhythmogenic CM : autosomal dominant, autosomal

recessive (Naxos, Carvajal) • Inflammatory CM: immune-mediated isolated and in the

context of systemic immune-mediated disease (eosinophilic, giant cell, cardiac sarcoidosis)

• Hereditary channelopathies (long and short QT syndrome, Brugada syndrome, cathecolaminergic syndrome)

“…Rare diseases are known as health orphans: lack of research, few treatments under development, little funding, no public awareness, and dependence on patients’ groups for advocacy. …Patients with rare diseases have the right to first-class medical knowledge, rapid diagnosis, research and treatment. …Patients should not have to depend on their families to find potential treatments for rare diseases”

Cardiovascular Pathology University of Padua Medical School-Padua,I

Speaker

Developing networks for rare cardiovascular disease in Europe

• Well structured rare disease networks already exist in Europe overall and in single EEC countries

• Patient associations are also well developed • Cardiac involvement in rare disease recognised to be

associated with negative prognosis • Minor if any involvement of cardiologists in the

diagnosis and management of rare cardiovascular disease and in rare disease networks

• Great potential for advances in research and clinical management of these disease if the cardiology community becomes aware of the problem

- How can the ESC raise awareness among adult cardiologists of RCD?- EDUCATION, EDUCATION, EDUCATION.

ESC WG-21 initiatives: Position statements Meetings Future strategies EDUCATION, EDUCATION, EDUCATION.

ESC WG-21 educational initiatives:

Position Papers

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www.escardio.org/cmpPreventing cardiac disease with molecular genetic research

www.escardio.org/cmpPreventing cardiac disease with molecular genetic research

www.escardio.org/cmpPreventing cardiac disease with molecular genetic research

Table 3 Possible presentations in clinically suspected myocarditis

Caforio et al. Eur Heart J 2013; 34:2636-48

Clinical presentations*:1) acute chest pain, pericarditic or pseudo-ischaemic

2 ) new-onset (days up to 3 months) or worsening of: dyspnoea at rest or exercise, and/or fatigue,

with or without left and/or right heart failure signs

3 ) subacute/chronic (>3 months) or worsening of: dyspnoea at rest or exercise, and/or fatigue, with

or without left and/or right heart failure signs

4 ) palpitation, and/or unexplained arrhythmia symptoms and/or syncope, and/or aborted sudden

cardiac death

5) unexplained cardiogenic shock

*If the patient is asymptomatic ≥2 diagnostic criteria should be met. !

www.escardio.org/cmpPreventing cardiac disease with molecular genetic research

Table 3 Diagnostic criteria for clinically suspected myocarditisCaforio et al. Eur Heart J 2013; 34:2636-48 Diagnostic criteria:

I. ECG/Holter/stress test features

1) newly abnormal 12 lead ECG and/or Holter and/or stress testing, any of the following: I to III

degree atrioventricular block, or bundle branch block, ST/T wave change (ST elevation or non

ST elevation, T wave inversion), sinus arrest, ventricular tachycardia or fibrillation and asystole,

atrial fibrillation, reduced R wave height, intraventricular conduction delay (widened QRS

complex), abnormal Q waves, low voltage, frequent premature beats, supraventricular

tachycardia

II. Myocardiocytolysis markers2 ) elevated TnT/TnI by local criteria (high-sensitivity assay, where available)

III. Morphofunctional abnormalities at cardiac imaging (echo/angio/CMR)3) new, otherwise unexplained LV and/or RV structure and function abnormality (including

incidental finding finding in apparently asymptomatic subjects): regional wall motion or global

systolic or diastolic function abnormality, with or without ventricular dilatation, with or without

increased wall thickness, with or without pericardial effusion, with or without endocavitary

thrombi.

IV. Tissue characterization by CMRoedema and/or LGE of classical myocarditic pattern (see text)

www.escardio.org/cmpPreventing cardiac disease with molecular genetic research

Table 3 Diagnostic criteria for clinically suspected myocarditis

Caforio et al. Eur Heart J 2013; 34:2636-48

Clinically suspected myocarditis if >1 clinical presentation and >1 diagnostic criteria fromdifferent categories, in the absence of: - 1) angiographically detectable coronary artery disease(coronary stenosis ≥ 50%) –2) known pre-existing cardiovascular disease or extra-cardiac causes thatcould explain the syndrome (e.g. valve disease, congenital heart disease, hyperthyroidism, etc.) (seetext). Suspicion is higher with higher number of fulfilled criteria. *If the patient is asymptomatic >2diagnostic criteria should be met.

www.escardio.org/cmpPreventing cardiac disease with molecular genetic research

Diagnostic criteria and proposed diagnostic approach for clinically suspected myocarditis

Caforio et al. Eur Heart J 2013; 34:2636-48

www.escardio.org/cmpPreventing cardiac disease with molecular genetic research

CD3=Cluster of differentiation 3; CD68=cluster of differentiation 68; HE=haematoxylin and eosin. Caforio A. et al. Eur Heart J. 2013;34:2636–2648.

www.escardio.org/cmpPreventing cardiac disease with molecular genetic research

ESC recommendations for immunosuppression in myocarditis

European Society of CardiologyWorking Group onMyocardial & Pericardial Diseases

Newsletter Issue 34 – April 2011

Caforio et al. Eur Heart J 2013; 34:2636-48

EMB=endomyocardial biopsy; PCR=polymerase chain reaction.

www.escardio.org/cmpPreventing cardiac disease with molecular genetic research

www.escardio.org/cmpPreventing cardiac disease with molecular genetic research

ACUTE MYOCARDITIS: DIAGNOSTIC AND MANAGEMENT PROTOCOL

Clinically Suspected Myocarditis

Haemodynamically stable Preserved LV function No eosinophilia No significant rhythm or conduction disturbances Not associated with systemic immune disease#

History, Examination, ECG, Echo, Laboratory tests: Troponin, CRP, ESR, Blood Cell Count, BNP, CMR; if Available, Serum Cardiac Autoantibodies

Consider coronary angiography and EMBNo coronary disease

General Supportive Therapy

Haemodynamically unstable, Decreased LV Function, Cardiogenic Shock

Pharmacological & if needed Mechanical support (ECMO, LVAD/

Bi-VAD, Bridge to heart transplant or to recovery)

Lymphocytic Giant cell, Eosinophilic, Sarcoidosis (acute decompensation)

General Supportive Therapy Immunosuppression if

unresponsive & virus negative EMB

Immunosuppression if infection negative EMB

# If myocarditis is associated with systemic immune disease exacerbation, therapy overlaps with treatment of the background disease (usually immunosuppression).

www.escardio.org/cmpPreventing cardiac disease with molecular genetic research

Ristic AD. et al. Eur Heart J. 2014;35:2279–2284.

!The current role of next-generation DNA sequencing in routine care of patients with

hereditary cardiovascular conditions: a viewpoint paper of the European Society of

Cardiology working group on myocardial and pericardial diseases and members of the

European Society of Human Genetics ! !

Authors: Jens Mogensen1*, J. Peter van Tintelen2, Siv Fokstuen3, Perry Elliott4, Irene M van Langen5,Benjamin Meder6, Pascale Richard18,19, Petros Syrris7,AlidaLP Caforio8, Yehuda Adler9, Aris Anastasakis10, Juan R. Gimeno11, Karin Klingel12, Ales Linhart13, Massimo Imazio14, Yigal Pinto15, Ruth Newbery-Ecob16, Joerg Schmidtke17, and Philippe Charron18, 19.

!DNA=deoxyribonucleic acid. Mogensen J. et al. Eur Heart J 2015: doi:10.1093/eurheartj/ehv122.

• Structure of the paper: !

• Introduction • Brief summary about hereditary cardiac conditions, genes, current

genetic testing and indications !

• Technical aspects of NGS, strategies and costs !

• Interpretation of genetic investigations: promise and pitfalls !

• Ethical aspects and information of patients !

• Recommendations for the clinical use of NGS !

!!

Next Generation Sequencing in hereditary cardiac conditions

!• WG task Group coordinator:

• Yigal Pinto (Nucleus Member, NL) • Core writing group:

• Yigal Pinto (Nucleus Member, NL), Alida LP Caforio (WG Vice-Chairperson, IT), Pascal de Groote (FR, task member), Juan Gimeno (ES, WG secretary), Stephane Heymans (NL, HFA representative)

• Extended writing group: • Denis Duboc (FR, task member), Els G Pieper (NL), Giuseppe Limongelli G (I, task

member), James Moon (UK, task member), Stephan Schueler (UK, task member) • WG Nucleus members:

• Yehuda Adler (IS), Aris Anastasakis (GR), Alida LP Caforio (Vice-Chairperson, IT), Juan Gimeno (secretary, ES), Perry M Elliott (Past-Chairman, UK), Massimo Imazio (IT), Karin Klingel (GE), Ales Linhart (CZ), Jens Mogensen (DE), Yigal Pinto (NL), Philippe Charron (Chairman, FR)

• Internal reviewers: • Eloisa Arbustini (IT), Michael Bohm (GE), Michel Komajda (FR), Pepe Zamorano (ES,

CPG Chairperson), Petar Seferovic (HFA representative) !• Under review (subsequent submission to Eur HJ in 2015)

A proposal for a revised definition of dilated cardiomyopathy and its implications for

clinical practice: A position statement of the Working Group on Myocardial and Pericardial

Diseases

Main Novelty of DCM position paper

• Novel classification of DCM ‘spectrum’ including - hypokinetic CMP (no dilatation) - preclinical phase !

• Criteria for being affected (major/minor) in relatives

!• Aetiology-directed work-up and treatment

CM=cardiomyopathy; DCM=dilated cardiomyopathy. Under review

!Position paper for Eur Heart J:

Myocardial involvement in systemic autoimmune diseases: current

management and perspectives for aetiology-directed therapy in

isolated inflammatory cardiomyopathy

(accepted by CPG in February 2015).

WG-21 New initiative (2015-2016 Position paper)

ESC WG-21 educational initiatives: ESC Guidelines (Task Force/Reviewers)

ESC Guidelines (Task Force/Reviewers)• ESC 2014 Guidelines on Hypertrophic Cardiomyopathy. Chairperson: Perry Elliott !

• ESC Guidelines on Pericardial diseases. Chairpersons: Yehuda Adler & Ph Charron. online publication

expected for ESC meeting, 2015. !

• To be continued…. !!

EURObservational Research Programme

Cardiomyopathy RegistryInvestigator meeting

ESC Congress, Barcelona

Monday 1st September 2014

Perry Elliott, Chair of the Registry

CMY - Investigator Meeting _ 1 Sept 2014

Acknowledgements

• EORP Team • A. Maggioni, T. Ferreira, M. Mannini, M. Konte, P-A. McNeill, M.Glémot !

• Executive Committee • P. Charron, J. Gimeno, M. Tendera, A. Maggioni, L. Tavazzi !

• ESC WG on Myocardial and Pericardial Disease • A. Caforio !

• AEPC • M. Gorenflo, G. Limongelli, J-P. Kaski !

• Cardiomyopathy Registry Investigators !

• Eleanor Wicks and Stefania Rosmini

61

CMY - Investigator Meeting _ 1 Sept 2014

Launch of Long-Term Registry 2014

62

EORP Cardiomyopathy and Myocarditis Registry - Protocol V1.0 – 10 June 2014 Page 1 of 2 9

Protocol

Cardiom yopathy and Myocardit is Regist ry

10/June/2014

Version 1.0

Study Sponsored by the European Society of Cardiology

in conjunction with the Working Group on

Myocardial & Pericardial Disease

Coordinat ing cent re :

EURObservat ional Research Programme European Society of Cardiology

Les Templiers, 2035 Route des Colles - CS 80179 Biot 06903 Sophia Antipolis Cedex - France

Tel: +33(0)492 94 76 00 Fax: +33(0)492 94 76 29 Email: eorp@escardio.org

Chairm an of the Execut ive Com m it tee

Professor Perry Elliott

Property of European Society of Cardiology (ESC)

Confidential May not be used, divulged, published, or otherwise disclosed without the written consent of ESC

EORP Cardiomyopathy and Myocarditis Registry - Protocol V1.0 – 10 June 2014 Page 1 of 2 9

Protocol

Cardiom yopathy and Myocardit is Regist ry

10/June/2014

Version 1.0

Study Sponsored by the European Society of Cardiology

in conjunction with the Working Group on

Myocardial & Pericardial Disease

Coordinat ing cent re:

EURObservat ional Research Programme European Society of Cardiology

Les Templiers, 2035 Route des Colles - CS 80179 Biot 06903 Sophia Antipolis Cedex - France

Tel: +33(0)492 94 76 00 Fax: +33(0)492 94 76 29 Email: eorp@escardio.org

Chairm an of the Execut ive Com m it tee

Professor Perry Elliott

Property of European Society of Cardiology (ESC)

Confidential May not be used, divulged, published, or otherwise disclosed without the written consent of ESC

EORP Cardiomyopathy and Myocarditis Registry - Protocol V1.0 – 10 June 2014 Page 1 of 2 9

Protocol

Cardiom yopathy and Myocardit is Regist ry

10/June/2014

Version 1.0

Study Sponsored by the European Society of Cardiology

in conjunction with the Working Group on

Myocardial & Pericardial Disease

Coordinat ing cent re :

EURObservat ional Research Programme European Society of Cardiology

Les Templiers, 2035 Route des Colles - CS 80179 Biot 06903 Sophia Antipolis Cedex - France

Tel: +33(0)492 94 76 00 Fax: +33(0)492 94 76 29 Email: eorp@escardio.org

Chairm an of the Execut ive Com m it tee

Professor Perry Elliott

Property of European Society of Cardiology (ESC)

Confidential May not be used, divulged, published, or otherwise disclosed without the written consent of ESC

EORP Cardiomyopathy and Myocarditis Registry - Protocol V1.0 – 10 June 2014 Page 1 of 2 9

Protocol

Cardiom yopathy and Myocardit is Regist ry

10/June/2014

Version 1.0

Study Sponsored by the European Society of Cardiology

in conjunction with the Working Group on

Myocardial & Pericardial Disease

Coordinat ing cent re :

EURObservat ional Research Programme European Society of Cardiology

Les Templiers, 2035 Route des Colles - CS 80179 Biot 06903 Sophia Antipolis Cedex - France

Tel: +33(0)492 94 76 00 Fax: +33(0)492 94 76 29 Email: eorp@escardio.org

Chairm an of the Execut ive Com m it tee

Professor Perry Elliott

Property of European Society of Cardiology (ESC)

Confidential May not be used, divulged, published, or otherwise disclosed without the written consent of ESC

Long term achievements from EORP cardiomyopathy and myocarditis registry!

!•Validation data at 1 year from the EORP myocarditis registry for the diagnostic criteria of biopsy-proven and clinically suspected myocarditis proposed in the position paper !•Feasibility and power calculations for a European Myocarditis Treatment Trial in biopsy-proven cases. !•Creation of a European network or specialty centres on cardiomyopathy and myocarditis, e.g. rare cardiovascular diseases !

WG-21 Communications tools

Newsletter

• Current composition: ➢ Paper of the month ➢ Case of the month and/or Image of the month ➢ Suggested readings !

➢ Most viewed part of the WEB site of the WG !➢ Spontaneous submissions for the Newsletter: ❑ massimo_imazio@yahoo.it (WEB Editor 2014-2016)

Web site visits

The most visited pages are the « Cases of the Month » and the paper of the month. Therefore, once they are on the web, we note that they visit other pages.

Web pages view per links : View pages

/communities/Working-Groups/cmp/Pages/welcome.aspx 3260/communities/Working-Groups/cmp/education/case/Pages/welcome.aspx 2390/communities/working-groups/cmp/education/case/Pages/low-voltage-EKG.aspx 1700/communities/Working-Groups/cmp/education/papers/Pages/welcome.aspx 1574/communities/Working-Groups/cmp/publications/Pages/position-papers.aspx 1386/communities/working-groups/cmp/education/case/Pages/mild-left-ventricular-hypertrophy.aspx 1275/communities/Working-Groups/cmp/education/papers/Pages/pericardiectomy-medical-management.aspx 1085/communities/working-groups/cmp/Pages/welcome.aspx 979/communities/working-groups/cmp/education/case/Pages/non-dilated-left-ventricle.aspx 975/communities/Working-Groups/cmp/education/case/Pages/congestive-heart-failure-case.aspx 817/communities/Working-Groups/cmp/publications/Pages/Recommendations-for-future-reading.aspx 815/communities/working-groups/cmp/education/case/Pages/pericardial-effusion-pulmonary-artery- 729/communities/Working-Groups/cmp/education/papers/Pages/Currentstateofknowledgeonaetiology.aspx 689/communities/Working-Groups/cmp/education/papers/Pages/colchicine-pericarditis-prevention.aspx 530/communities/Working-Groups/cmp/education/papers/Pages/nonsteroidal-anti-inflammatory-drug- 520/communities/Working-Groups/cmp/education/papers/Pages/cmp-paper-month-dec-2014.aspx 390/communities/Working-Groups/cmp/education/case/Pages/October08.aspx 370/communities/Working-Groups/cmp/education/case/Pages/image-october.aspx 350/communities/Working-Groups/cmp/education/case/Pages/Myocardial-or-Pericardial-disease-that-is-the-question.aspx 348

!WG-21: educational initiatives !Annual WG Meeting !WG-endorsed non- ESC meeting

WG meeting in 2014 (post-poned, held in February 4-6, 2015) Yehuda Adler, Chairperson

WG meeting in 2015, F Cecchi & I Olivotto, Chairpersons

!

Endorsed meeting in 2008

Endorsed meeting in 2012

Official WG meeting in 2015 22- 24 October 2015

Local Organiser : Franco Cecchi & Iacopo Olivotto !!!

WG-endorsed non ESC meeting in 2015, Elliott PM & G Limongelli, Chairpersons

!WG-21: Future educational initiatives !!Educational long-term program

General scheme for development of Educational products

1. Produce a WG position paper (task group meetings)

2. Publish the WG position paper

3. Disseminate new knowledge -Booklet, News letter -Webinar -Case based learning -Educational course (at WG annual meeting)

4. Evaluate new knowledge -ESC e-learning plat-form -Curriculum / certification / accreditation

Similar scheme for each WG position/opinion paper: -Management of Myocarditis (Eur Heart J. 2013 Sep;34(33):2636-48) -Management of cardiac tamponade (Eur Heart J. 2014 July) -Etc…

Schedule for Development and Sponsorship period

Workshops during the WG annual meeting: February 2015

Webinars Programme: May & November 2015

Key Message Booklets publication: Launch in May 2015 Case-Based Leaning

platform: Launch in June 2015

E-learning Platform: development phase from May 2015 to December 2015

• Production, Dissemination & Evaluation (2014 – 2015): !!!

!!!!!

!➢E-learning Platform: Launch 1st quarter of 2016 ➢ If sponsorship meets expectation to fund the programme !!

Sponsorship

The educational Programme can be achieved if funds are raised to cover costs of production and dissemination.

• What has been done: - A project description and request for funding were prepared

and sent to industries by ESC WG representative !• Sponsorships achieved by May 2015:

!

• SHIRE

• GENZYME !

• waiting for response from other potential sponsors

WG 21: WORK IN PROGRESS

SHORT TERM (2015-2016) •Webinars on new published position papers !•Position paper, or extended review on Rare cardiovascular diseases (pending CPG approval) !•LONG TERM: •Transfer the HUB-&-Spoke system used for common cardiovascular disease (e.g. Acute Coronary Syndromes) to Rare Cardiovascular Disease !•Stimulate the ESC leadership towards design and development of multicenter ESC intervention trials in the field of Rare Cardiovascular Disease

Can we make it?

!!

Yes, I made it! I make it I can make it I will try to make it !How can I make it? !I wish to make it I can’t make it I will not make it ________________ Which step did I reach today? !

Can we make it?

!!

The crisis according to Albert Einstein, 1930. !“Do not pretend that things will change if we always do the same. The crisis is the best blessing that can happen to people and countries, because the crisis brings progress. Creativity is born from the distress, as the day is born from the dark night. It is in crisis that invention, discovery and large strategies are born.Who ever overcomes crisis, outdoes himself without being overcome.”

!• Thanks to all ! !

• Become a WG member: it is free!