Newsletter #14 - October 2017

	VASCERNdays2017: Success of our First Annual Seminar! More than 80 participants gathered during the VASCERN days 2017, our 1st 2 days Annual Seminar, which took place in Paris on October 13 & 14, 2017. A big thank you…
	VASCERN is now on Facebook! The VASCERN coordination team is very happy to announce that we now have an official Facebook page! As planned in our 1st year Action Plan (WP 10 on Communication), this Facebook page will…
	VASCERN YouTube Channel is launched The availability of conferences on YouTube via the VASCERN YouTube Channel is part of our first year action plan (Work Package 7). Our objective is to share content about: VASCERN…
	Health in the digital society, Message from EU Commissioner for Health 'Health in the digital society' conference, Tallinn, 17 October 2017 Message from Vytenis Andriukaitis, European Commissioner for Health and Food Safety "The public consultation drew nearly 1500 replies and showed…
	Rare Barometer Voice: make your voice heard on Rare Disease Research Rare Barometer Voice is a EURORDIS initiative. "Rare Barometer Voices is a community of people living with a rare disease who are willing to participate in EURORDIS-Rare Diseases Europe surveys…
	Report: 5th International Summer School on Rare Disease Registries Read the Report from RD-Connect of the Rare Diseases Registries Summer School, which took place in Rome in September. VASCERN was represented by our ePAG Representative, Christina Grabowski (Morbus Osler,…
	Recommended Practices for Data Standardisation in the Context of the operation of European Reference Networks Output of the RD-Action workshop on Data Standardisation, co-hosted by the European Commission (DG Sante) (April 2017) RD-Action Report on Recommended Practices for Data Standardisation in the Context of the operation…
	VASCERN 1st Annual Seminar, Paris, October 13-14 The VASCERN 1st annual seminar will take place in Paris on October 13-14! This event will gather 80 participants, including all our Members for the first time! @VASCERN Follow…
	VASCERN Coordination Team is growing! The Project coordination team based in Paris (Healthcare Provider Coordinating: Assistance Publique Hôpitaux de Paris, Hospital Bichat - Center of Reference for Marfan Syndrome and related disorders) is growing: 2…
	ERNs: a conceptual framework of cross-border healthcare A study published in Orphanet Journal of Rare Diseases analyses the conceptual framework of European Reference Networks, established in the context of the Cross-Border Healthcare Directive (2011/24/EU). This study examines…

Up-coming events

Fri

03

Nov

2017

VASCERN HHT-WG monthly virtual meeting

8 AM (GMT+1) Videoconference call - Webex

The HHT-WG monthly virtual meeting takes place every 1st Friday of the month at 8 AM (GMT+1).

The HHT-WG will discuss patient pathways & complex clinical cases, among others!
Tue

07

Nov

2017

VASCERN ePAG virtual monthly meeting

10 AM (GMT +1) Videoconference call

VASCERN Patient Group (ePAG - European Patient Advocacy Group) virtual monthly meeting takes place every 1st Tuesday of every month at 10 AM (GMT +1).
Tue

07

Nov

2017
VASCERN eHealth / Training & Education monthly virtual meeting

5 PM (GMT+1)Videoconference call - Webex
VASCERN eHealth WG monthly virtual meeting takes place every 1st Tuesday of every month at 5 PM (GMT+1).

The eHealth & Training / Education WG works on:
- VASCERN-APP: A free Mobile Application for IOS and Android, which will enable patients & doctors to find and reach out easily all VASCERN Centers of expertise and Patient Organisations
- Pills of Knowledge: to develop education material available in several formats, including Videos (eLearning tools)
- Availability of conferences & videos on YouTube
Wed

08

Nov

2017
VASCERN MSA-WG virtual monthly meeting

5 PM (GMT +1)Videoconference call - Webex
The VASCERN MSA-WG monthly virtual meeting takes now place every 2nd Wednesday of every month at 5 PM (GMT +1).

The VASCERN MSA-WG will discuss:
- Patient pathways
- Patient passports
- Clinical trial
- Registry project
- Clinical case
Mon

13

Nov

2017
VASCERN VASCA-WG monthly virtual meeting

7 PM (GMT+1)Videoconference call - Webex
The VASCERN VASCA-WG (Vascular Anomalies) monthly virtual meeting takes place every 2nd Monday of every month at 7 PM (GMT +1).

The VASCA-WG will discuss, among others:
- Patient pathway
- Registry
- Clinical trial
- Clinical case
Mon

20

Nov

2017
VASCERN PPL-WG monthly virtual meeting

5.30 PM (GMT +1)Videoconference call - Webex
The VASCERN PPL-WG (Pediatric and Primary Lymphedema) monthly virtual meeting takes place every 3rd Monday of every month at 5.30 PM (GMT +1).

The PPL-WG will discuss:
- Patient pathways
- Clinical guidelines
- Clinical case
- Clinical guidelines
- Registry
Tue

21

Nov

2017
VASCERN Registry-WG monthly virtual meeting

6 PM (GMT+1)Videoconference call - Webex
Following the Paris face to face meeting during the 1st annual seminar, the VASCERN Registry WG meeting #4 will take place place virtually in November.

The VASCERN Registry WG will discuss:
- The EU common minimal dataset for Rare disease registration
- The FAIR principle, which was presented to all by Dr. Marco ROOS during our 1st Annual Seminar
Mon

27

Nov

2017
VASCERN HTAD-WG monthly virtual meeting

5 PM (GMT +1)Videoconference call - Webex
The VASCERN HTAD-WG (Heritable Thoracic Aortic Diseases) monthly virtual meeting takes place every 4th Monday of every month at 5 PM (GMT +1).

The HTAD-WG will discuss:
- Patient pathway
- Clinical guidelines
- Pills of Knowledge
- Registry
- Clinical case
Wed

07

Mar

2018

Sat

10

Mar

2018

RE(ACT) Congress: International Congress On Research Of Rare And Orphan Diseases

Bologna, Italy

All information about the RE(ACT) CONGRESS & registration available here
Thu

03

May

2018

Sat

05

May

2018

10th International Research Symposium on Marfan Syndrome and Related Disorders

Amsterdam, The Netherlands
Wed

30

May

2018

Fri

01

Jun

2018

ISSVA 22nd International Workshop

Amsterdam

ISSVA 2018

This biannual meeting, which is attended by a wide array of specialists including intervention radiologists, dermatologists, plastic surgeons, ENT surgeons, pediatricians, pediatric surgeons, oncologists and pathologists, presents the latest developments in this fast moving area.

All information and registration on the event page here
Thu

11

Oct

2018

Fri

12

Oct

2018

VASCERN Days 2018

To be confirmed

VASCERN Days 2018 (2 days annual seminar) will take place on October 11-12, 2018.

Location is to be confirmed!
Thu

07

Mar

2019

Sun

10

Mar

2019

RE(ACT) International Congress On Research Of Rare And Orphan Diseases

Bologna, Italy

SAVE THE DATE - RE(ACT) Congress 2018

Visit the RE(ACT) Community website

EU calls

Wed

18

Apr

2018

H2020 Rare Disease European Joint Programme Cofund

The European Commision Call for the European Joint Programme Co-fund on Rare Diseases has been published:

http://ec.europa.eu/research/participants/portal/desktop/en/opportunities/h2020/topics/sc1-bhc-04-2018.html

The overall objective is to implement a European Joint Programme (EJP) Cofund for Rare Diseases which would create a research and innovation pipeline "from bench to bedside" ensuring rapid translation of research results into clinical applications and uptake in healthcare for the benefit of patients.

The initiative should follow the policies and contribute to the objectives of the International Rare Diseases Research Consortium (IRDiRC).