Канал: VASCERN ERN

How can VASCERN help you?

How can VASCERN help you?

How does the decrease in collagen production with age affect the arteries? #ehlersdanlossyndrome

How does the decrease in collagen production with age affect the arteries? #ehlersdanlossyndrome

Hereditary Hemorrhagic Telangiectasia (HHT) and Pregnancy

Hereditary Hemorrhagic Telangiectasia (HHT) and Pregnancy

Pregnancy Series: Pregnancy and Lymphedema

Pregnancy Series: Pregnancy and Lymphedema

Pregnancy Series: Delivery and Postpartum care and Lymphedema

Pregnancy Series: Delivery and Postpartum care and Lymphedema

Pregnancy Series: Family Planning and Lymphedema

Pregnancy Series: Family Planning and Lymphedema

Everything you wanted to know about Vascular Ehlers-Danlos Syndrome Part 2: Expert Q&A webinar

Everything you wanted to know about Vascular Ehlers-Danlos Syndrome Part 2: Expert Q&A webinar

Everything you wanted to know about vEDS: Expert Q&A

Everything you wanted to know about vEDS: Expert Q&A

Genetics and Primary Lymphedema: Q&A with a Clinical Genetics Expert

Genetics and Primary Lymphedema: Q&A with a Clinical Genetics Expert

Genetic Counseling in Heritable Thoracic Aortic Diseases: What You Need to Know

Genetic Counseling in Heritable Thoracic Aortic Diseases: What You Need to Know

VASCERN Rare Disease Day Video 2023

VASCERN Rare Disease Day Video 2023

Pregnancy and PGD in Vascular Ehlers Danlos Syndrome

Pregnancy and PGD in Vascular Ehlers Danlos Syndrome

What Marfan Patients Can Do Before and After Aortic Surgery: Expert Insights with Prof. Kallenbach

What Marfan Patients Can Do Before and After Aortic Surgery: Expert Insights with Prof. Kallenbach

Aortic Surgery in Marfan Syndrome Explained

Aortic Surgery in Marfan Syndrome Explained

HHT and Nosebleeds

HHT and Nosebleeds

Diagnostic and Management Pathway for Capillary Malformations

Diagnostic and Management Pathway for Capillary Malformations

Rare Disease Day Video

Rare Disease Day Video

Lymphedema from a teenager's perspective

Lymphedema from a teenager's perspective

Diagnostic and Management Pathway for Venous Malformations

Diagnostic and Management Pathway for Venous Malformations

Leo and the FAIR registry

Leo and the FAIR registry

Diagnostic and Management Pathway for Lymphatic Malformations

Diagnostic and Management Pathway for Lymphatic Malformations

VASCERN Webinar: Diagnostic and Management Pathway for Severe and/or Rare Infantile Hemangiomas

VASCERN Webinar: Diagnostic and Management Pathway for Severe and/or Rare Infantile Hemangiomas

Genetic Testing for primary lymphedema - a mother's perspective

Genetic Testing for primary lymphedema - a mother's perspective

VASCERN Webinar: On collagen, Ehlers-Danlos Syndromes and vascular fragility: what’s in a name?

VASCERN Webinar: On collagen, Ehlers-Danlos Syndromes and vascular fragility: what’s in a name?

VASCERN Webinar: HHT and the lungs

VASCERN Webinar: HHT and the lungs

VASCERN Webinar: Classification of vascular anomalies

VASCERN Webinar: Classification of vascular anomalies

Deleting a Panel

Deleting a Panel

Enrolling a Patient

Enrolling a Patient

Inviting Panel Members

Inviting Panel Members

Scheduling Meeting

Scheduling Meeting

Uploading Medical Documents

Uploading Medical Documents

Writing an Outcome and Closing a Panel

Writing an Outcome and Closing a Panel

Downloading Dicom studies into Desktop

Downloading Dicom studies into Desktop

Switching between Webex and CPMS

Switching between Webex and CPMS

VASCERN Webinar: Infections and Lymphedema

VASCERN Webinar: Infections and Lymphedema

VASCERN supports Rare Disease Day!

VASCERN supports Rare Disease Day!

What is an acute aortic dissection?

What is an acute aortic dissection?

What is a chronic aortic dissection?

What is a chronic aortic dissection?

How is the aorta monitored?

How is the aorta monitored?

What is aortic root replacement and when is it indicated?

What is aortic root replacement and when is it indicated?

What to know before and during pregnancy in HTAD

What to know before and during pregnancy in HTAD

Seven Signs of Marfan syndrome

Seven Signs of Marfan syndrome

The PIK3CA gene and related vascular malformations

The PIK3CA gene and related vascular malformations

Mobile App Dataset Editing

Mobile App Dataset Editing

Secure Link using HCP Anywhere

Secure Link using HCP Anywhere

VASCERN Webinar: HTAD and COVID-19 Q&A session

VASCERN Webinar: HTAD and COVID-19 Q&A session

Klippel -Trenaunay syndrome (KTS)

Klippel -Trenaunay syndrome (KTS)

Treatment for lymphatic malformations

Treatment for lymphatic malformations

The lymphatic system & lymphatic malformations

The lymphatic system & lymphatic malformations

Lymphedema from a child's perspective

Lymphedema from a child's perspective

Vascular Ehlers-Danlos syndrome: Introduction and new criteria

Vascular Ehlers-Danlos syndrome: Introduction and new criteria

Arterial fragility in other types of Ehlers Danlos Syndrome: Part 3 - Other rarer types of EDS

Arterial fragility in other types of Ehlers Danlos Syndrome: Part 3 - Other rarer types of EDS

Clinical Features and Diagnostic criteria of vascular Ehlers-Danlos syndrome (vEDS) - Part 1

Clinical Features and Diagnostic criteria of vascular Ehlers-Danlos syndrome (vEDS) - Part 1

Arterial fragility in other types of Ehlers Danlos Syndrome: Part 2 - Kyphoscoliotic EDS

Arterial fragility in other types of Ehlers Danlos Syndrome: Part 2 - Kyphoscoliotic EDS

Genetics of vascular EDS: Part 2 - Pathogenic variants in COL3A1: dominant negative

Genetics of vascular EDS: Part 2 - Pathogenic variants in COL3A1: dominant negative

Monitoring and Management of vascular Ehlers-Danlos syndrome (vEDS) - Part 3

Monitoring and Management of vascular Ehlers-Danlos syndrome (vEDS) - Part 3

Overview of animal studies in vascular Ehlers-Danlos syndrome (vEDS)

Overview of animal studies in vascular Ehlers-Danlos syndrome (vEDS)

Structure of the Medium-Sized Arteries Working Group (MSA WG) in VASCERN

Structure of the Medium-Sized Arteries Working Group (MSA WG) in VASCERN

Organisations of services in the UK

Organisations of services in the UK

Natural history and complications of vascular Ehlers-Danlos syndrome (vEDS) - Part 2

Natural history and complications of vascular Ehlers-Danlos syndrome (vEDS) - Part 2

Arterial fragility in other types of Ehlers Danlos Syndrome: Part 1- Introduction, Classical EDS

Arterial fragility in other types of Ehlers Danlos Syndrome: Part 1- Introduction, Classical EDS

Genetics of vascular EDS: Part 3 - Pathogenic variants in COL3A1 : haplo-insufficiency

Genetics of vascular EDS: Part 3 - Pathogenic variants in COL3A1 : haplo-insufficiency

RaDiCo-SEDVasc (The French Rare Disease Cohort on Vascular Ehlers-Danlos syndrome)

RaDiCo-SEDVasc (The French Rare Disease Cohort on Vascular Ehlers-Danlos syndrome)

Genetics of vascular Ehlers-Danlos syndrome (vEDS) : Part 1 - Pathogenic variants in COL3A1

Genetics of vascular Ehlers-Danlos syndrome (vEDS) : Part 1 - Pathogenic variants in COL3A1

Pregnancy in vascular Ehlers-Danlos syndrome (vEDS) – Part 2 - Is IVF safe in vEDS patients?

Pregnancy in vascular Ehlers-Danlos syndrome (vEDS) – Part 2 - Is IVF safe in vEDS patients?

Pregnancy in vascular Ehlers-Danlos syndrome (vEDS) – Part 1

Pregnancy in vascular Ehlers-Danlos syndrome (vEDS) – Part 1

Medium sized artery disease in TGF-beta vasculopathies or syndromic aortopathies

Medium sized artery disease in TGF-beta vasculopathies or syndromic aortopathies

Role of patient advocates in a European Reference Network

Role of patient advocates in a European Reference Network

Hereditary Haemorrhagic Telangiectasia from VASCERN HHT

Hereditary Haemorrhagic Telangiectasia from VASCERN HHT

Management of Vascular Anomalies

Management of Vascular Anomalies

Cellulitis / Erysipelas in Pediatric and Primary Lymphedema

Cellulitis / Erysipelas in Pediatric and Primary Lymphedema

Arterial Complications of Vascular Ehlers-Danlos Syndrome (vEDS)

Arterial Complications of Vascular Ehlers-Danlos Syndrome (vEDS)

Unmet medical needs in vEDS - patients perspective

Unmet medical needs in vEDS - patients perspective

What is Heritable Thoracic Aortic Disease (HTAD)?

What is Heritable Thoracic Aortic Disease (HTAD)?

Gastrointestinal Complications in vascular Ehlers-Danlos Syndrome (vEDS)

Gastrointestinal Complications in vascular Ehlers-Danlos Syndrome (vEDS)

Multi-disciplinary Expertise Teams for Vascular Anomalies

Multi-disciplinary Expertise Teams for Vascular Anomalies

Le Sport et le Syndrome de Marfan

Le Sport et le Syndrome de Marfan

Diagnostic Approaches for Vascular Anomalies

Diagnostic Approaches for Vascular Anomalies

Compression in Pediatric and Primary Lymphedema

Compression in Pediatric and Primary Lymphedema

Classification of Vascular Anomalies

Classification of Vascular Anomalies

3 a week - the importance of exercise in Marfan and HTAD

3 a week - the importance of exercise in Marfan and HTAD

Kurs i Sällsynta Diagnoser

Kurs i Sällsynta Diagnoser

Rare Disease Course for Residents

Rare Disease Course for Residents

How can VASCERN help you?

How can VASCERN help you?

Information video for patients and healthcare professionals about ERNs

Information video for patients and healthcare professionals about ERNs

An Overview of Pediatric and Primary Lymphedema

An Overview of Pediatric and Primary Lymphedema

Marfan Syndrome - Diagnosis by Prof Julie De Backer

Marfan Syndrome - Diagnosis by Prof Julie De Backer

5. Importance and goals of AD Awareness Day by Shahrezade Miceli

5. Importance and goals of AD Awareness Day by Shahrezade Miceli

9. Information technology for diagnosis and follow-up by Alessia Paglialonga

9. Information technology for diagnosis and follow-up by Alessia Paglialonga

8. Stefano Maullu at Aortic Dissection Awareness Day 2017

8. Stefano Maullu at Aortic Dissection Awareness Day 2017

3 Genetic basis of Aortic Dissection by Dr. Susanna Marelli

3 Genetic basis of Aortic Dissection by Dr. Susanna Marelli

18. Type A Aortic Dissection by Prof Carlo Antona

18. Type A Aortic Dissection by Prof Carlo Antona

10. Maria Carla Favini from the J. Peter Onlus Association

10. Maria Carla Favini from the J. Peter Onlus Association

13. Prof Marcelo Ferreira: Interviewing Survivors of Aortic Dissection

13. Prof Marcelo Ferreira: Interviewing Survivors of Aortic Dissection

12. Paolo Federici presents the VASCERN patient group (ePAG)

12. Paolo Federici presents the VASCERN patient group (ePAG)

20. Clinical presentation of Type B Dissection by Dr Andrea Melloni

20. Clinical presentation of Type B Dissection by Dr Andrea Melloni

49 Prof Franco Grego at AD Awareness Day

49 Prof Franco Grego at AD Awareness Day

24. Prof Stefano Bonardelli at AD Awareness Day 2017

24. Prof Stefano Bonardelli at AD Awareness Day 2017

43. Post-dissection aneurysm: presentation of a complex case by Prof Marcelo Ferreira

43. Post-dissection aneurysm: presentation of a complex case by Prof Marcelo Ferreira

52. Dr Francesca Bianchi at AD Awareness Day 2017

52. Dr Francesca Bianchi at AD Awareness Day 2017

28. Heike Caravati at AD Awareness Day 2017

28. Heike Caravati at AD Awareness Day 2017

32 Dr Fabrizio Monaco at AD Awareness Day 2017

32 Dr Fabrizio Monaco at AD Awareness Day 2017

40. Dr Alessandro Castiglioni at AD Awareness Day 2017

40. Dr Alessandro Castiglioni at AD Awareness Day 2017

50. From Petticoat to...Stabilize by Prof Germano melissano

50. From Petticoat to...Stabilize by Prof Germano melissano

51. Post Dissection aneurym treatment with branched endografts by Prof Marcelo Ferreira

51. Post Dissection aneurym treatment with branched endografts by Prof Marcelo Ferreira

45. Techniques of false lumen embolization of chronic dissection by Prof Nicola Mangialardi

45. Techniques of false lumen embolization of chronic dissection by Prof Nicola Mangialardi

41. Aortic dissection in paediatric patients by Prof Alessandro Frigiola

41. Aortic dissection in paediatric patients by Prof Alessandro Frigiola

22. Diagnostic Imaging of Type B Dissection by Dr Enrico Rinaldi

22. Diagnostic Imaging of Type B Dissection by Dr Enrico Rinaldi

27. Dr Marco Cursi at AD Awareness Day 2017

27. Dr Marco Cursi at AD Awareness Day 2017

53. Dott. Ubaldo del Carro at AD Awareness Day 2017

53. Dott. Ubaldo del Carro at AD Awareness Day 2017

29. Vascular Anatomy of the spinal cord by Prof Germano Melissano

29. Vascular Anatomy of the spinal cord by Prof Germano Melissano

33. The use of IVUS in Type B Dissection by Dr Roberto Silingardi

33. The use of IVUS in Type B Dissection by Dr Roberto Silingardi

38. Management of the aortic root by Prof Davide Pacini

38. Management of the aortic root by Prof Davide Pacini

35. Dr Claudio Novali at AD Awareness Day 2017

35. Dr Claudio Novali at AD Awareness Day 2017

39. Importance of aortic arch involvement in Type B dissection by Prof Santi Trimarchi

39. Importance of aortic arch involvement in Type B dissection by Prof Santi Trimarchi

46. Prevention and treatment of visceral damage by Prof Patrizio M. Castelli

46. Prevention and treatment of visceral damage by Prof Patrizio M. Castelli

21. Natural History of Chronic Type B Dissection by Prof Gianluca Faggioli

21. Natural History of Chronic Type B Dissection by Prof Gianluca Faggioli

42. Management of aortic arch dissection by Prof Davide Pacini

42. Management of aortic arch dissection by Prof Davide Pacini

48. Knickerboker and Candy plug techniques by Dr Enrico Rinaldi

48. Knickerboker and Candy plug techniques by Dr Enrico Rinaldi

26. Prof Santi Trimarchi at AD Awareness Day 2017

26. Prof Santi Trimarchi at AD Awareness Day 2017

54. Open repair of chronic dissection with aneurysmal degeneration by Dr Domenico Baccellieri

54. Open repair of chronic dissection with aneurysmal degeneration by Dr Domenico Baccellieri

55. Renal protection during open repair of chronic Type B Dissection by Prof Yamume Tshomba

55. Renal protection during open repair of chronic Type B Dissection by Prof Yamume Tshomba

56. ROTEM in the Aortic dissection open repair by Dr. Fabrizio Monaco

56. ROTEM in the Aortic dissection open repair by Dr. Fabrizio Monaco

57. Strategies for prevention of spinal cord ischemia by Prof Germano Melissano

57. Strategies for prevention of spinal cord ischemia by Prof Germano Melissano

58. Treatment of Type B dissecting aneurysms under DHCA by Prof laurent Chiche

58. Treatment of Type B dissecting aneurysms under DHCA by Prof laurent Chiche

1. Europe and Rare Disease by Prof Germano Melissano

1. Europe and Rare Disease by Prof Germano Melissano

1 Welcome and brief introduction by all participants

1 Welcome and brief introduction by all participants

2 VASCERN Structure and organization

2 VASCERN Structure and organization

3 VASCERN Patient Group (ePAG)

3 VASCERN Patient Group (ePAG)

4 VASCERN 1st Year Action Plan: State of Play

4 VASCERN 1st Year Action Plan: State of Play

5 The ERN Policy

5 The ERN Policy

6 The ERN Collaborative Platform and the Clinical Patient Management System

6 The ERN Collaborative Platform and the Clinical Patient Management System

7 ERN Board of Member States views

7 ERN Board of Member States views

8 European Joint Programme on Rare Diseases Research: Opportunities for ERNs

8 European Joint Programme on Rare Diseases Research: Opportunities for ERNs

9 Q&A for Achievements, Challenges & Opportunities for ERNs

9 Q&A for Achievements, Challenges & Opportunities for ERNs

10 VASCERN Terms of Reference for Validation by the Board

10 VASCERN Terms of Reference for Validation by the Board

11 Priorities for Work Packages: feedback from RDWG Chairs

11 Priorities for Work Packages: feedback from RDWG Chairs

12 Transversal WGs - eHealth /Training and Education WG

12 Transversal WGs - eHealth /Training and Education WG

13 Transversal WGs - Patient Registry WG

13 Transversal WGs - Patient Registry WG

14 Funding

14 Funding

15 New ERN call for new ERN members

15 New ERN call for new ERN members

16 Participation in interERN WG: Monitoring

16 Participation in interERN WG: Monitoring

17 Participation in interERN WG: Ethics and Legal Issues

17 Participation in interERN WG: Ethics and Legal Issues

18 RD Action work for interERN participation

18 RD Action work for interERN participation

19 Criteria for an event to be endorsed by VASCERN

19 Criteria for an event to be endorsed by VASCERN

20 Registry: the FAIR principles

20 Registry: the FAIR principles

An Overview of Hereditary Haemorrhagic Telangiectasia (HHT) by Prof Claire Shovlin

An Overview of Hereditary Haemorrhagic Telangiectasia (HHT) by Prof Claire Shovlin

Hereditary Haemorrhagic Telangiectasia (HHT) for ENT doctors by Prof Anette Kjeldsen

Hereditary Haemorrhagic Telangiectasia (HHT) for ENT doctors by Prof Anette Kjeldsen

2. VASCERN and Vascular Diseases - Dr. Alessandro Pini at Aortic Dissection Awareness Day 2017

2. VASCERN and Vascular Diseases - Dr. Alessandro Pini at Aortic Dissection Awareness Day 2017

17. Genetics of Marfan Syndrome - Dr. Alessandro Pini at Aortic Dissection awareness Day 2017

17. Genetics of Marfan Syndrome - Dr. Alessandro Pini at Aortic Dissection awareness Day 2017

25. Insight into preoperative planning - Dr Tara Mastracci at Aortic Dissection Awareness Day 2017

25. Insight into preoperative planning - Dr Tara Mastracci at Aortic Dissection Awareness Day 2017

47. Complex stent grafts for the treatment of chronic dissection by Dr Tara Mastracci

47. Complex stent grafts for the treatment of chronic dissection by Dr Tara Mastracci

The ERN Strategy

The ERN Strategy

ERN testimonial - The story of Elisa (Italian subtitles)

ERN testimonial - The story of Elisa (Italian subtitles)

ERN testimonial - The story of Paula (Spanish subtitles)

ERN testimonial - The story of Paula (Spanish subtitles)

ERN testimonial - The story of Jasper (Dutch subtitles)

ERN testimonial - The story of Jasper (Dutch subtitles)

ERN testimonial - The story of Daniel (French subtitles)

ERN testimonial - The story of Daniel (French subtitles)

ERN videoclip (subtitles in all languages )

ERN videoclip (subtitles in all languages )