This month we talk to Christina Grabowski, European Patient Advocay Group (ePAG) Deputy Co-Chair of the Hereditary Haemorrhagic Telangiectasia (HHT) Working Group (HHT WG), from Germany. Christina represents the German HHT Patient Organisation - Morbus Osler Selbsthilfe e. V and gives us her thoughts on the role of a patient advocate...
VASCERN Newsletter #44 - November 2020
VASCERN Spotlights: Christina Grabowski
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New Pill of Knowledge video on PIK3CA gene mutations and related vascular malformations
A new Pill of Knowledge video from the Vascular Anomalies Working Group (VASCA WG) is now available! Created by Hevas and validated by the VASCA WG, it covers the topic… |
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VASCERN submits Month 18 SGA Activity Report and CEF Year 3 proposal this month!
November was a busy month for the VASCERN coordination and project management team with the writing and submission of both our Month 18 Activity Report and the CEF Year 3… |
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Manifesto for European Health Union – Sign to support future rare disease policy
We encourage you to sign the new manifesto for a European Health Union in order to strengthen the call to all Members of Parliaments and European leaders for a better EU role… |
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VASCA WG sets up monthly CPMS case discussion meetings
Members of the Vascular Anomalies Working Group (VASCA WG) held a virtual consultation using the Clinical Patient Management System (CPMS) to discuss the case of an Italian patient this in… |
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VASCERN Days 2020: accomplishment of our first online annual seminar!
Due to COVID-19, our annual seminar, VASCERN Days 2020, could not be held in Paris as planned. Luckily, we were able to arrange 3 days of online meetings and networking… |
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New video shows benefits of making FAIR Registries
A new video, highlighting the importance of FAIR registries, appeared in the October newsletter of the International Society for the Study of Vascular Anomalies (ISSVA). It is a great video… |
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Continuous Monitoring of ERNs: Data submitted for Semester 1 of 2020
The VASCERN Coordination and Project Management team submitted the data for the 18 core ERN indicators required by the European Commission for the first semester of 2020! This monitoring exercise… |
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New VASCERN Registries Project Poster
The VASCERN Registries Project launched on May 1st, 2020 after our proposal was selected to receive funding from the Health Programme of the European Union under the call for proposals… |
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CPMS virtual meetings this month
This month, members of the Vascular Anomalies Working Group (VASCA WG) held a virtual meeting using the Clinical Patient Management System (CPMS) in order to discuss two new patients cases.… |
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Mon14Dec202010:30AM-12:30PM (CET)Videoconference call - Webex
The monthly meeting of this interERN Working Group will take place online on December 14th, 2020 at 10:30 AM (CET). Romain Alderweireldt (VASCERN Ethical and Legal WG Chair) will be representing VASCERN.
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Mon14Dec20205:00PM-6:00PM (CET)Videoconference call - Webex
The VASCERN MSA-WG Monthly Meeting will be taking place on December 14th, 2020 at 5 pm (Paris time).
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Wed16Dec20203:45PM-5:00PM (CET)Videoconference call - Webex
The VASCERN VASCA-WG Monthly Meeting will take place on December 16th, 2020 at 3:45 pm (Paris time).
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Thu17Dec20203:00PM-4:00PM (CET)Videoconference call - Webex
The VASCERN Registry Technical Teams Working Group Meeting will take place online on Thursday December 17th, 2020 from 3 PM to 4 PM (CET).
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Mon21Dec20205:30PM-6:30PM (CET)Videoconference call - Webex
The VASCERN PPL-WG Monthly Meeting will take place on December 21st, 2020 at 5:30 pm (Paris time).
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Mon11Jan20212:00PM-3:30PM (CET)Online
The Knowledge Generation WG Meeting will take place on Monday 11th January 2021 from 14:00-15:30 CET. Natasha Barr (VASCERN Project Officer) will be in attendance.
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Wed13Jan2021Fri15Jan2021Online
The online IRDiRC Conference & RE(ACT) Congress will take place online from 13-15 January, 2020. Hosted by The BLACKSWAN FOUNDATION, IRDRIC And EJP-RD, this event brings together scientific leaders, patients and policy makers to advance research on rare diseases.
Register here
To see the agenda: click here
To see the time table: click here
For more information, visit the event website here
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Mon01Feb2021
A preliminary announcement for the European Joint Programme on Rare Diseases (EJP RD) Joint Transnational Call (JTC) 2021 has just been released!
The topic for this next call will be “Social sciences and Humanities Research to improve health care implementation and everyday life of people living with a rare disease”
Transnational research proposals must cover at least one of the following areas, which are equal in relevance for this call:
- Health & social care services research to improve patient and familial/household health outcomes
- Economic Impact of Rare diseases
- Psychological and Social Impact of Rare diseases
- Studies addressing the impact/burden of the delay in diagnosis and of the lack of therapeutic intervention.
- e-Health in rare diseases: Use of innovative technology systems for care practices in health and social services
- Development and enhancement of health outcomes research methods in rare diseases
- Effects of pandemic crisis and the global outbreak alert and response on the rare disease field, and the emergence of innovative care pathways in this regard.
Each consortium submitting a proposal must involve at least three principal investigator partners from at least three different countries that are joining this Call JTC 2021. The maximum duration of the project is 3 years.
The call is scheduled to open in December, with a pre-proposal submission deadline in February. More information to come soon...stay tuned!
Find the full preliminary announcement here
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Wed24Feb2021Online
The EURORDIS Black Pearl Awards celebrate the inspirational qualities of people living with a rare disease along with those who go that extra mile to make a difference to their lives. The black pearl symbolises these unique individuals, organisations and companies who demonstrate an incredible combination of hard work and dedication in their daily lives. This year, the tenth anniversary special online edition of the EURORDIS Black Pearl Awards will take place during the evening of Wednesday, 24 February 2021.
The call for photo submissions for the Photo Award are now open until the 31st of January 2021. Submit your photo here
More information here
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Sun28Feb2021
Rare Disease Day takes place on the last day of February each year. This year it will take place on Sunday February 28th, 2021!
The main objective of this international event is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives.
More information here
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Thu06May2021Sat08May2021Copenhagen, Denmark
The 10th International Conference of the International Lymphoedema Framework will take place in Copenhagen, Denmark, from May 6-8, 2021 (new dates due to COVID-19).
Pernille Henriksen, ePAG Co-Chair for PPL WG, will be present at this event and will give a presentation entitled Infections; the experiences, the fear and the solutions from a patient point of view for the patient day on Saturday, May 8th, 2021.
See the preliminary programme here.
For more information, check out their website here.
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Mon14Jun2021Wed16Jun2021Barcelona, Spain
Due to the COVID19, the EMBO Workshop on Vascular Malformations has been postponed. The event was due to take place from April 1st to 3rd, 2020 and will now take place from June 14th -16th, 2020 in Barcelona, Spain.
Professor Miikka VIKKULA, Chair of the VASCERN Vascular Anomalies Working Group (VASCA WG), will be one of the speakers!
REGISTRATION DEADLINE - 17 May 2021
ABSTRACT SUBMISSION DEADLINE - 17 May 2021
PAYMENT DEADLINE - 1 June 2021
For more information on this event (programme and registration), take a look here.
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Mon01Feb2021
A preliminary announcement for the European Joint Programme on Rare Diseases (EJP RD) Joint Transnational Call (JTC) 2021 has just been released!
The topic for this next call will be “Social sciences and Humanities Research to improve health care implementation and everyday life of people living with a rare disease”
Transnational research proposals must cover at least one of the following areas, which are equal in relevance for this call:
- Health & social care services research to improve patient and familial/household health outcomes
- Economic Impact of Rare diseases
- Psychological and Social Impact of Rare diseases
- Studies addressing the impact/burden of the delay in diagnosis and of the lack of therapeutic intervention.
- e-Health in rare diseases: Use of innovative technology systems for care practices in health and social services
- Development and enhancement of health outcomes research methods in rare diseases
- Effects of pandemic crisis and the global outbreak alert and response on the rare disease field, and the emergence of innovative care pathways in this regard.
Each consortium submitting a proposal must involve at least three principal investigator partners from at least three different countries that are joining this Call JTC 2021. The maximum duration of the project is 3 years.
The call is scheduled to open in December, with a pre-proposal submission deadline in February. More information to come soon...stay tuned!
Find the full preliminary announcement here
