Newsletter #61 - October 2022
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EuroThrombosis & EuroVessels 2022 scientific meeting
What a great way to end the month of October with its slew of conferences, seminars and scientific meetings discussing new research outcomes and improvements in patient treatment and care.… |
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Highlights from the International HHT Scientific Conference
The 14th International HHT Scientific Conference is the world's largest gathering of HHT professionals and researchers, and it serves as an important forum for the exchange of new discoveries and… |
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Everything You Wanted to Know About VASCERN Days 2022
On the 6th and 7th of October, 2022, VASCERN held its annual seminar in Paris, France. It was a great pleasure to welcome our members and invited stakeholders from EJP-RD,… |
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Exchange Program Interview: Dr. Edit Nagy
In our VASCERN Exchange Program interview, we are thrilled to interview Dr. Edit Nagy from the Karolinska University Hospital in Stockholm, Sweden. Dr. Edit Nagy is a member of the… |
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GenTAC Webinar: Family Planning and Pregnancy – US and Europe Perspectives
The Marfan Foundation webinar on Family Planning and Pregnancy for Genetic Aortic Conditions hosted by the GenTAC Alliance Patient, Families, and Clinicians Education Working Group took place on Wednesday, September 28th 2022.… |
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New Facilitation Window Mentors and educators, experts in the field, are available online to answer your questions and to support you during your journey in this #EJPRD MOOC until December 3rd, 2022. Take… |
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Tue08Nov202210.00AM-11.30AMOnline
The VASCERN ePAG Monthly Meeting will take place on November 8th, 2022 at 10.00 am (Paris time).
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Thu10Nov2022Fri11Nov2022Istituto Superiore di Sanità, Via Giano della Bella, 34 – Rome, Italy
As part of the training activities proposed by EJP RD, an international course entitled “Training for patient representatives and advocates on leadership and communication skills” is a 2-day training programme organised by Istituto Superiore di Sanità (ISS) in close collaboration with EJP-RD task partners, open to patient representatives involved in the 24 European Reference Networks (ERNs), including members of the European Patients Advisory Groups (ePAGS), and other RD patient advocates.
The in-person training will take place from November 10th – 11th at ISS in Rome, Italy.
The training course may be adapted to an online format in case of uncertainty due to the evolution of the Covid-19 pandemic, or of other adverse conditions that might occur. In case of face-to-face delivery, the organisers have foreseen
- hotel accommodation for all selected participants
- 4 travel and accommodation fellowships for participants living and working in an EU-13 Country or in Turkey.
Registration is currently open but will close on April 13th. The training is limited to 30 attendees, those chosen to participate from among the applicants will be informed by May 3rd, with a reserve list open until May 20th (if the training is delivered face-to-face) or September 9th (in case of online delivery).
More information and registration here: https://www.ejprarediseases.org/event/training-for-patient-representatives-and-advocates-on-leadership-and-communication-skills/
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Mon14Nov2022Thu17Nov2022Online
The EURORDIS All ePAG Meeting will take place from November 14 to 17, 2022.
This will be a 4-day online event with 5 sessions. There are 2 networking sessions and 3 sessions dedicated to exploring how and why to listen to and represent your community, each lasting an hour. These sessions were inspired by a practical guide co-developed by EURORDIS and the patient community.
You can attend as many sessions as you want, and pre-registration is not required.
Access meeting links here.
See you there!
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Wed16Nov20224.00PM-5.00PMOnline
The VASCERN VASCA-WG Monthly Meeting will take place on November 16th, 2022 at 4.00 pm (Paris time).
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Thu17Nov20225:30PM-6.30PMOnline
The VASCERN NEUROVASC-WG Monthly Meeting will take place on November 17th, 2022 at 5.30 pm (Paris time).
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Mon21Nov20225:30PM-6.30PMOnline
The VASCERN PPL-WG Monthly Meeting will take place on November 21st, 2022 at 5.30 pm (Paris time).
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Fri25Nov20228.00AM-9.00AMOnline
The VASCERN HHT-WG Monthly Meeting will take place on November 25th, 2022 at 8.00 am (Paris time).
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Mon28Nov20225.00PM-6.30PMOnline
The VASCERN HTAD-WG Monthly Meeting will take place on November 28th, 2022 at 5.00 pm (Paris time).
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Thu01Dec2022Fri02Dec2022Paris, France
The International Rare Diseases Research Consortium (IRDiRC) and the European Joint Programme on Rare Diseases (EJP RD) are jointly organizing a two-day conference on clinical research networks (CRNs) for rare diseases, which will take place on December 1 and 2.
The objective of this conference is to gather experts from different continents to increase mutual knowledge on CRNs structure, activities and identify pathways to stimulate collaboration and interoperability of these networks.
It is not possible anymore to register for in-person participation. To register for online participation, please complete this registration form.
Find more information here.
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Tue31Jan2023Fri03Feb2023Brussels, Belgium
V.A. Cure network are pleased to invite you to VAC 2023, our international conference on Vascular Anomalies, which will be held in Brussels from 31 January to 3 February 2023. The conference is organized by the V.A. Cure network, an EU-MSCA-ITN project that performs vascular research with the aim to find new treatment strategies for vascular anomalies.
VAC 2023 is about the latest developments in basic, translational and clinical research in vascular anomalies. With lectures by top experts in these fields and many opportunities for networking, it will be a unique occasion to exchange knowledge among key players in the chain from fundamental research to clinical applications.
We hope to see you in Brussels!
More information and registration: https://vacure-conference.net/
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Wed15Mar2023Sat18Mar2023Berlin, Germany
EJP RD is pleased to announce that the next edition of the 7th RE(ACT) Congress and 5th IRDiRC Conference will be held in person in Berlin, Germany from March 15th – 18th, 2023.
The joint event “RE(ACT) Congress and IRDiRC Conference 2023” aims to bring together scientific leaders and experts and young scientists from various breakthrough scientific fields to present cutting-edge research, exchange ideas, and discuss rare diseases research policies. Patients and patient organizations committed to research will also be in attendance to share their experiences and perspectives.
The RE(ACT) Congress and IRDiRC Conference 2023 represents an exciting program with outstanding speakers and an in-person event with multiple ways of networking!
We look forward to welcoming you to Berlin in March 2023. More information here: https://www.ejprarediseases.org/save-the-date-react-congress-and-irdirc-conference-2023/
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Tue13Jun2023Thu15Jun2023Nottingham, UK
Save the date! We are pleased to announce that the 11th International Lymphoedema Framework Conference will take place on 13 – 15 June 2023 in Nottingham, UK. The venue is the East Midlands Conference Centre, University of Nottingham.
The conference is organised in collaboration with the Welsh framework, Lymphoedema Wales.
An inspiring scientific programme is being prepared with plenty of possibilities for gaining new knowledge and sharing experiences about lymphoedema and related disorders, and for networking with health care professionals and patients from all over the world.
More information will soon be available on the website.
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Sun13Nov2022
The European Joint Programme on Rare Diseases (EJP RD) is glad to announce that the last round for the Research Mobility Fellowships funding opportunity is open until November 13th. The call aims to support PhD students, postdocs, and medical doctors in training to undertake scientific visits fostering specialist research training outside their countries of residence.
The exchange can be carried out (1) within the same ERN (Full Members and Affiliated Partners), (2) between different ERNs (Full Members and Affiliated Partners), or (3) between ERN Full Members / Affiliated Partners and non-ERN institutions.
Either home or host (secondment) institution must be a Full Member or Affiliated Partner of an ERN at the time when the application is submitted, as well as during the proposed period of the training stay.
Successful applicants should acquire new competences and knowledge related to their research on rare diseases, with a defined research plan and demonstrable benefit to the ERN of the home and/or host institution.
The research mobility fellowships are meant to cover stays of 4 weeks to 6 months duration.
More information here.
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Thu01Dec2022
The European Joint Programme on Rare Diseases (EJP RD) Networking Support Scheme (NSS) is now open!
The scheme will provide financial support to applicants for fostering organization of workshops or conferences for new research networks or existing/expanding research networks to strengthen collaborations and to enable exchange of knowledge.
Eligible applicants to apply for the NSS are health care professionals, researchers and patient advocacy organizations from the following countries involved in the EJP RD (in alphabetical order):
Armenia*, Austria, Belgium, Bulgaria*, Croatia*, Czech Republic*, Denmark, Estonia*, Finland, France, Germany, Georgia*, Greece, Hungary*, Ireland, Israel, Italy, Latvia*, Lithuania*, Luxembourg, Malta*, Norway, Poland*, Portugal, Romania*, Serbia*, Slovakia*, Slovenia*, Spain, Sweden, Switzerland, The Netherlands, Türkiye*, United Kingdom.
The countries that are indicated with an asterisk (*) are usually seen as underrepresented countries.
At least one Principal applicant and two co-applicants from three different countries mentioned above have to apply together for support of a Networking event.
Maximum budget for networking event: € 30,000
The last collection date for the Networking Support Scheme in EJP-RD is December 1, 2022 at 14.00 (CET).
All information, including the call documents, can be found on the EJP-RD website here.
