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EURORDIS RARE DISEASES EUROPE SGA 2018 [EURORDIS SGA FY2018] [811115] - Operating Grant
Layman
Evaluation Report of SGA 2018: Layman's Summary lead by EURORDIS - [D.11]
Type: Document, reports...
Published on: 08/03/2019

EURORDIS will produce a public layman’s summary of the final evaluation report. The layman’s summary will be based on the final Reports of the Specific Grant 2018 which comprise: Technical Report,...
EURORDIS will produce a public layman’s summary of the final evaluation report. The layman’s summary will be based on the final Reports of the Specific Grant 2018 which comprise: Technical Report, Financial Report, and Contractual Annexes.
EURORDIS Open Academy lead by EURORDIS - [D.9]
Type: Document, reports...
Published on: 08/03/2019

All material presenting the concept and planning of the EURORDIS Open Academy will be provided, including an outline of all training face-to-face or online organised in its framework.
In addition, any...
All material presenting the concept and planning of the EURORDIS Open Academy will be provided, including an outline of all training face-to-face or online organised in its framework.
In addition, any publicly available printed and online material produced within the EURORDIS Academy will also be provided. For the EURORDIS ExPRESS Summer School these entail:
a) EURORDIS Summer School Programme
b) EURORDIS Summer School Flyer
c) EURORDIS Summer School Presentations
d) Screenshot of online training section
EURORDIS good governance procedures lead by EURORDIS - [D.10]
Type: Document, reports...
Published on: 08/03/2019

a) Governance Chart 2018
b) Representation Chart 2018
c) Team Chart 2018
d) Action Plan 2018 & Budget
e) EURORDIS By-laws
EURORDIS online & printed communication materials & tools lead by EURORDIS - [D.3]
Type: Document, reports...
Published on: 07/03/2019

a) 11 monthly eNews reports in 7 languages
b) 22 bi-monthly Member news reports in 6 languages
c) EURORDIS website in 7 languages
d) EURORDIS Activity Report 2017
e) EURORDIS social media
f) List of ...
a) 11 monthly eNews reports in 7 languages
b) 22 bi-monthly Member news reports in 6 languages
c) EURORDIS website in 7 languages
d) EURORDIS Activity Report 2017
e) EURORDIS social media
f) List of webinars, topics addressed and target audience
ECRD Vienna 2018 lead by EURORDIS - [D.4]
Type: Other
Published on: 07/03/2019

a) List of ECRD 2018 Vienna Official and Associated Partners
b) List of members of Programme Committee ECRD 2018 Vienna
c) Website for ECRD 2018 Vienna and other communication tools (mobile app)
d) Pr...
a) List of ECRD 2018 Vienna Official and Associated Partners
b) List of members of Programme Committee ECRD 2018 Vienna
c) Website for ECRD 2018 Vienna and other communication tools (mobile app)
d) Programme of ECRD 2018 Vienna
e) Conference report

Patient Engagement in ERN & Healthcare Pathways lead by EURORDIS - [D.5]
Type: Document, reports...
Published on: 07/03/2019

a) List of 24 ePAGs
b) List of ePAG representatives per ePAG
c) List of Working Groups transversal to ePAGs
d) List of ePAG webinars
e) ePAG representatives meetings agenda and list of participants
f)...
a) List of 24 ePAGs
b) List of ePAG representatives per ePAG
c) List of Working Groups transversal to ePAGs
d) List of ePAG webinars
e) ePAG representatives meetings agenda and list of participants
f) List of capacity-building meetings for NAs
g) ePAGs Terms of Reference

Patient engagement in advice & assessment of product lifecycle (EMA, HTA) lead by EURORDIS - [D.6]
Type: Document, reports...
Published on: 07/03/2019

A report will be produced on EURORDIS support to Patient engagement in advice & assessment of product lifecycle (EMA, HTA) for the SGA
EURORDIS monthly Therapeutic reports lead by EURORDIS - [D.7]
Type: Document, reports...
Published on: 07/03/2019

11 Monthly therapeutic reports: EURORDIS produces therapeutic reports on a monthly basis (except August). These reports are disseminated to patient representatives participating at the EMA, the EURORD...
11 Monthly therapeutic reports: EURORDIS produces therapeutic reports on a monthly basis (except August). These reports are disseminated to patient representatives participating at the EMA, the EURORDIS TAG, the EURORDIS BoD, the European Public Affairs Committee (EPAC), the EURORDIS Summer School Alumni (a total of 350 individuals), in addition to the EURORDIS membership at large via the Member News. In 2018 there will be 11 therapeutic reports: 3 examples will be provided
Meetings of European Networks (CNA, CEF, ENRDHL) lead by EURORDIS - [D.8]
Type: Document, reports...
Published on: 07/03/2019

CNA: 2 meetings of the Council of National Alliances will be held in 2018
a) CNA meeting in March 2018, a report will be produced by July (with validation time for NAs)
b) CNA meeting in Paris in Oct...
CNA: 2 meetings of the Council of National Alliances will be held in 2018
a) CNA meeting in March 2018, a report will be produced by July (with validation time for NAs)
b) CNA meeting in Paris in October 2018, a report will be produced by December
CEF: 1 meeting of the Council of European Federations will be held in 2018, back to back with the CNA meeting in Paris in October 2018. Following the meeting a report will be produced.
c) CEF meeting agenda
d) Report of CEF meeting
e) List of members of CEF
f) List of meetings organised under the programme “Support to European Rare Disease Federations”
ENRDHL: 1 meeting of the ENRDHL will be held in 2018
g) Caller Profile Analysis results

EURORDIS Membership lead by EURORDIS - [D.1]
Type: Document, reports...
Published on: 06/03/2019

a) EURORDIS membership list
b) EURORDIS membership growth
c) EURORDIS contact database
Rare Disease Day 2018 materials lead by EURORDIS - [D.2]
Type: Websites, patent filling, videos etc
Published on: 06/03/2019

a) RDD 2018 Poster and visual identity
b) RDD 2018 Info pack
c) RDD 2018 Website: the dedicated RDD website is sustained throughout the year and updated yearly around RDD
d) RDD 2018 social media: suc...
a) RDD 2018 Poster and visual identity
b) RDD 2018 Info pack
c) RDD 2018 Website: the dedicated RDD website is sustained throughout the year and updated yearly around RDD
d) RDD 2018 social media: such as the RDD dedicated Facebook page and Twitter feed
e) RDD 2018 Video: the video will be made publicly available 2 weeks before Rare Disease Day 2018 and will be translated in more than 30 languages.
Details
Start date: 01/01/2018
End date: 31/12/2018
Duration: 12 month(s)
Current status: Finalised
Programme title: 3rd Health Programme (2014-2020)
EC Contribution: € 1 027 785,00