The VASCERN HTAD-WG Monthly Meeting will take place on January 4th, 2021 at 5 pm (Paris time).

The 13th VASCERN Council Meeting will take place on January 8th, 2021 from 5 PM to 6:30 PM (Paris time).

The Knowledge Generation WG Meeting will take place on Monday 11^th January 2021 from 2 PM to 3:30 PM (CET). Natasha Barr (VASCERN Project Officer) will be in attendance.

The VASCERN MSA-WG Monthly Meeting will be taking place on January 11th, 2021 at 5 pm (Paris time).

The VASCERN ePAG Monthly Meeting will be taking place on January 12th, 2021 from 10 am to 11:30 am (Paris time).

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

The monthly meeting of this interERN Working Group will take place online on January 18th, 2021 at 11:30 AM (CET). Romain Alderweireldt (VASCERN Ethical and Legal WG Chair) will be representing VASCERN.

The VASCERN PPL-WG Monthly Meeting will take place on January 18th, 2021 at 5:30 pm (Paris time).

The VASCERN VASCA-WG Monthly Meeting will take place on January 20th, 2021 at 3:45 pm (Paris time).

The Integration Working Group Meeting will take place online on January 21st, 2021 at 2:00PM (CET).

The VASCERN Registry Technical Teams Working Group Meeting will take place online on Thursday January 21st, 2021 from 3 PM to 4 PM (CET).

In the context of the EJP RD internal call for innovation projects in clinical trials methodologies in limited populations, that opened on December 7th, 2020 and will close on March 3rd, 2021, an “Information/Networking Event” will be organized on January 25th, 2021. The meeting will take place online from 3 PM to 6:30 PM (CET).

All interested applicants are invited to participate in this event. 

The objectives of the meeting are as follows:

• Presentation of the call modalities and objectives followed by Q&A session with participants
• Presentation of various perspectives of the remaining challenges that the present call will target (for example in relation to: use of registries, innovation in methodology space, PCOMS, pharmacogenetic biomarkers and pharmacokinetics development, the vision of regulators on future of RD clinical trials, model for innovating therapy in ultra RDs, ethical guidance)
• Open session for participants to discuss the gaps that they would like to tackle and initiate partnerships among interested parties.

The registration to the meeting is mandatory and will close on January 18th, 2021.

Please register here.

The detailed agenda of the meeting can be found here. 

If you have any questions or need help please contact the EJPRD Team at: innovation.callsec@ejprarediseases.org

The VASCERN HTAD-WG Monthly Meeting will take place on January 25th, 2021 at 5 pm (Paris time).

The Internal ERN Coordinators Group Meeting will take place online on January 27th, 2021 at 5:00PM (CET).

The VASCERN HHT-WG Monthly Meeting #42 will take place on January 29th, 2021 at 8 am (Paris time).

The VASCERN MSA-WG Monthly Meeting will be taking place on February 8th, 2021 at 5 pm (Paris time).

The VASCERN ePAG Monthly Meeting will be taking place on February 9th, 2021 from 10 am to 11:30 am (Paris time).

The VASCERN PPL-WG Monthly Meeting will take place on February 15th, 2021 at 5:30 pm (Paris time).

The VASCERN VASCA-WG Monthly Meeting will take place on February 17th, 2021 at 3:45 pm (Paris time).

The VASCERN Registry Technical Teams Working Group Meeting will take place online on Thursday February 18th, 2021 from 3 PM to 4 PM (CET).

The 2nd VASCERN Pregnancy Working Group Meeting will take place online on February 19th, 2021 from 11 AM to 12 PM (CET).

The VASCERN HTAD-WG Monthly Meeting will take place on February 22nd, 2021 at 5 pm (Paris time).

The Rare 2030 Final Conference will take place online on February 23rd, 2021 from 1:30-6:30PM.

It will mark the end of the two-year foresight study and will be the occasion to present the Rare 2030 policy recommendations for a new policy framework! An excellent opportunity to learn more about the Rare 2030 recommendations in detail and to learn how to use them for dvocacy, research and development, healthcare and policy work.

Register here

Draft agenda available here

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.

More information here

A webinar on the latest improvements of the Clinical Patient Management System (CPMS) and the new features will take place on February 25th, 2021 at 3PM (CET). Ibrahim Donmez, our IT Helpdesk & End User Support Specialist, will be present at this online event.

The VASCERN HHT-WG Monthly Meeting #43 will take place on February 26th, 2021 at 8 am (Paris time).

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

World Lymphedema Day (WLD) will take place on March 6th, 2020! WLD is an annual patient advocate-driven celebration that was officially established by the U.S. Senate in 2016, and since then, has developed into a truly global movement.

The patient organisations and patient advocates for Pediatric and Primary Lymphedema (PPL) of VASCERN’s European Patient Advocacy Group (ePAG) have many events and activities lined up! Many associations are hosting webinars, sending daily newsletters and creating other events throughout March. You can find more information on the websites or social media profiles of the local associations.

The monthly meeting of this interERN Working Group will take place online on March 8th, 2021 at 10:00 AM (CET). Romain Alderweireldt (VASCERN Ethical and Legal WG Chair) will be representing VASCERN.

The VASCERN MSA-WG Monthly Meeting will be taking place on March 8th, 2021 at 5 pm (Paris time).

The VASCERN ePAG Monthly Meeting will be taking place on March 9th, 2021 from 10 am to 11:30 am (Paris time).

The Internal ERN Coordinators Group Meeting will take place online on March 10th, 2021 at 5:00PM (CET).

The 4th ERN Transversal Study Group on Pregnancy and Family Planning will take place online on March 15th, 2021 at 2:30 PM (CET).

The VASCERN PPL-WG Monthly Meeting will take place on March 15th, 2021 at 5:30 pm (Paris time).

The VASCERN VASCA-WG Monthly Meeting will take place on March 17th, 2021 at 3:45 pm (Paris time).

The monthly meeting of this interERN Working Group will take place online on March 22nd, 2021 at 10:00 AM (CET). Romain Alderweireldt (VASCERN Ethical and Legal WG Chair) will be representing VASCERN.

The VASCERN HTAD-WG Monthly Meeting will take place on March 22nd, 2021 at 5 pm (Paris time).

VASCERN will hold a webinar on Wednesday March 24th from 5:00-6pm CET on the topic of Infections and Lymphedema with Pediatric and Primary Lymphedema Working-Group (PPL-WG) members Dr. Kirsten VAN DUINEN, Dr. Tanja PLANINŠEK RUČIGAJ, Manuela LOURENÇO MARQUES (ePAG Deputy Co-Chair for PPL) and Pernille HENRIKSEN (ePAG Co-Chair for PPL).

Please register to join here!

This webinar will include an informative presentation followed by a Q&A session, featuring questions collected from the PPL patient community! Don't miss it!

The VASCERN HHT-WG Monthly Meeting #44 will take place on March 26th, 2021 at 8 am (Paris time).

The 9th ERN IT Advisory Group Meeting will take place online on Wednesday March 31st, 2021 from 9 AM to 1 PM (CET). Ibrahim Donmez, our IT Helpdesk & End User Support Specialist, will be present at this event.

The 4th Scientific Meeting on Vascular Ehlers Danlos Syndrome organised by The DEFY Foundation will be held virtually on April 9th, 2021 from 10:00 am to 4:00 pm Eastern.

This event is powered by The Marfan Foundation and The VEDS Movement.

Key areas of focus will be sharing knowledge in basic, translational and clinical aspects of Vascular Ehlers-Danlos syndrome with the goals of developing research directions for advancing therapeutic strategies, development and/or integration of pioneering concepts and theories and establishing collaborations.

The 3rd VASCERN Pregnancy Working Group Meeting will take place online on April 9th, 2021 from 12:30 PM to 1:30 PM (CET).

The inter ERN Monitoring Working Group will have an online meeting on April 9th, 2021 at 2 PM (CET).

The monthly meeting of this interERN Working Group will take place online on April 14th, 2021 at 10:00 AM (CET). Romain Alderweireldt (VASCERN Ethical and Legal WG Chair) will be representing VASCERN.

The Integration Working Group Meeting will take place online on April 14th, 2021 at 3:00PM (CET).

The VASCERN PPL-WG Monthly Meeting will take place on April 19th, 2021 at 5:30 pm (Paris time).

The VASCERN VASCA-WG Monthly Meeting will take place on April 21st, 2021 at 3:45 pm (Paris time).

The VASCERN HHT-WG Monthly Meeting #45 will take place on April 23rd, 2021 at 8 am (Paris time).

The next ERN-EYE webinar, Marfan syndrome: An Update, will be a joint webinar with VASCERN. It will take place on April 27th, 2021 at 6PM (CET). 

The first half hour will cover Marfan Syndrome and the Eye with speakers Professor Bart P LEROY and Dr. Elke O KREPS and the second half hour will cover the General & Cardiovascular Aspects of Marfan Syndrome with VASCERN's Heritable Thoracic Aortic Working Group (HTAD WG ) Chair, Professor Julie DE BACKER.

More information and link to register here.

Direct link to register here.

The Internal ERN Coordinators Group Meeting will take place online on April 29th, 2021 at 5:00PM (CET).

The ERN Coordinators Group Meeting will take place online on April 30th, 2021 from 10 AM to 5 PM (CET).

The VASCERN MSA-WG Monthly Meeting will be taking place on May 10th, 2021 at 5 pm (Paris time).

The VASCERN ePAG Monthly Meeting will be taking place on May 11th, 2021 from 10 am to 11:30 am (Paris time).

The VASCERN PPL-WG Virtual Spring Meeting will take place on Wednesday, May 12th, 2021 from 3pm to 7pm (CET).

The International Society for the Study of Vascular Anomalies (ISSVA) will host virtually a “Debates & Updates” meeting from May 13th to 15th, 2021.

This 3-day online meeting will include talks about genetics, basic research, novel therapies and debates in the evaluation and management of patients with vascular anomalies.

Members of our Vascular Anomalies (VASCA) Working Group will attend this online event and Professor Leo SCHULTZE KOOL, Co-Chair of the VASCA-WG, is the ISSVA Meetings Committee Chair.

Click here to register.

More information about this event here.

The VASCERN Registry Technical Teams Working Group Meeting will take place online on May 20th, 2021 from 3 PM to 4 PM (CET).

Day 2 of the VASCERN VASCA-WG Spring Meeting will take place on Tuesday, May 25th, 2021 from 2pm to 7pm (CET).

The VASCERN HTAD-WG Virtual Spring Meeting will take place on Thursday, May 27th, 2021 from 2pm to 6pm (CET).

The VASCERN HHT-WG Monthly Meeting #46 will take place on May 28th, 2021 at 8 am (Paris time).

The VASCERN MSA-WG Virtual Spring Meeting will take place on Monday, June 3rd, 2021 from 2pm to 6pm (CET).

The VASCERN VASCA-WG Monthly Meeting will take place on June 16th, 2021 at 3:45 pm (Paris time).

The VASCERN Registry Technical Teams Working Group Meeting will take place online on June 17th, 2021 from 3 PM to 4 PM (CET).

The VASCERN HHT-WG Virtual Spring Meeting will take place on Friday, June 18th, 2021 from 8:30AM to 12:30PM (CET).

The VASCERN PPL-WG Monthly Meeting will take place on June 21st, 2021 at 5:30 pm (Paris time).

June is Global Hereditary Hemorrhagic Telangiectasia (HHT) Awareness month and Global HHT Awareness Day takes place on June 23rd!

This international event is the occasion to raise awareness for this rare vascular disease. We encourage you to see what the HHT patient organisations of our European Patient Advocacy Group (ePAG) have planned this month and we will publish a short review article at the end of the month to share their activities.

The inter ERN Monitoring Working Group will have an online meeting on June 24th, 2021 at 5:30 PM (CET).

The VASCERN HTAD-WG Monthly Meeting will take place on June 28th, 2021 at 5 pm (Paris time).

The VASCERN Communication Advisory Task Force Meeting will take place online on June 29th, 2021 at 5 PM (CET).

VASCERN will hold a webinar on Wednesday, June 30th, 2021 from 5pm to 6pm (CET) entitled: On collagen, the Ehlers-Danlos Syndromes and vascular fragility: what's in a name? with presented Dr. Fransiska Malfait (Medium-Sized Arteries Working Group Co-chair), from Ghent University Hospital, Belgium.

This webinar, that will consist of a scientific presentation followed by a question and answer session, will be primarily directed towards health care professionals – but all interested participants are welcome to attend!

Please register to join here!

The inter ERN Monitoring Working Group will have an online meeting on July 1st, 2021 at 5 PM (CET).

The Marfan Foundation's first-ever Virtual Annual Conference will take place online from July 8-11, 2021!

Register here

"The four-day event offers innovative ways to reconnect with old friends and make new ones through condition discussions, social events, and open virtual spaces to hang-out and share. The medical sessions on Marfan, Loeys-Dietz, VEDS, and Stickler syndrome will, as always, feature leading experts in the field and will allow for robust question and answer exchanges. There is no cost to register.

For our international community members, the conference offers sessions on aortic disease in Italian, French, German, and Spanish, as well as virtual meet-ups in each of these languages. In addition, several sessions will be translated live into Spanish."

For more information on this exciting event, click here

EJP-RD is organising an integrative research and innovation strategy meeting on the theme of alignment of national rare disease strategies with the EJP-RD. The fully online meeting will take place on July 8th, 2021 from 09:30 AM to 5 PM (CET).

This event is open for policy makers and persons involved in national, EU, and international rare diseases strategies.

The workshop is organised by one of the EJP-RD work packages and will focus on:

• Presentation of EJP-RD advancement and analysis of national actions
• Review of country-level best practices and challenges identified from a survey
• Discussion of the way forward.

Online registration for the event is open until July 1st at the link here.

The VASCERN MSA-WG Monthly Meeting will be taking place on July 12th, 2021 at 5 pm (Paris time).

The VASCERN ePAG Monthly Meeting will be taking place on July 13th, 2021 from 10 am to 11:30 am (Paris time).

The 14th VASCERN Council Meeting will take place on July 16th, 2021 from 4:30 PM to 6:00 PM (Paris time).

The Ehlers-Danlos Society's upcoming event, EDS ECHO Event Series: Vascular Ehlers-Danlos-Syndrome (vEDS) – A Comprehensive Conference on Care for Individuals with vEDS will take place July 30-31, 2021.

With Scientific Chair Dr. Sherene Shalhub, the latest research, management, and scientific information on vEDS and comorbidities will be presented, including topics such as:

• Family planning, anticipating, and managing pregnancy complications
• Children with vEDS
• Exercise with vEDS
• Migraines
• BP control and management of autonomic dysfunction
• Gastrointestinal abnormalities in vEDS
• Pulmonary abnormalities in vEDS

Objectives for this event are as follows:

• To understand the genetics and biology of vascular EDS (vEDS)
• To understand the presentation and management of non-vascular, and vascular pathology in vascular EDS (vEDS)
• To understand the considerations of family planning and pregnancy in vascular EDS (vEDS)

9.25 CME/CEU/CU Credits are available for Healthcare Professionals to claim for sessions that are viewed LIVE. VASCERN MSA WG member, Prof Xavier Jeunemaitre, will also be a presenter at this event.

The full agenda and registration information can be found here

The VASCERN PPL-WG Monthly Meeting will take place on August 16th, 2021 at 5:30 pm (Paris time).

The VASCERN HTAD-WG Monthly Meeting will take place on August 23rd, 2021 at 5 pm (Paris time).

The 28th World Congress of Lymphology will take place from September 20th to 24th, 2021 at the Grand Hyatt Hotel in Athens, Greece.

For more information on this event, check out their website here.

If you have any questions or need help, please contact: lymphology@concopco.com

In the context of EJP RD’s ERN Workshops, a face-to-face workshop on clinical epidemiological research for ERNs titled “Clinical Research: The Basics & Beyond” (consisting of presentations by experts in the field of epidemiology and a feedback session on the research projects of participants) is being organised by Prof. Olaf Dekkers and Prof. Frits Rosendaal of the Leiden University Medical Center.

The in-person event will take place over two days on 30th September and 1st October 2021 at the Hotel Golden Tulip Leiden Centre, Schipholweg 3, 2316 XB Leiden, the Netherlands.

The workshop is open by prior registration and selection to medical specialists affiliated to an ERN Full Member or Affiliated Partner institution and who have a special interest in clinical research with databases. Registration closes on 18th June 2021, and those selected to participate from among the applicants will be informed by 9th July 2021 of their selection.

Deadline to apply: 18th June 2021

More information and registration here: https://www.ejprarediseases.org/event/clinical-research-with-databases-the-basics-beyond-workshop-in-clinical-epidemiological-research-for-erns/

The LGDA/LMI International Conference on Complex Lymphatic Anomalies will take place online from October 2-3rd, 2021.

Organised by the Lymphangiomatosis & Gorham's Disease Alliance (LGDA), with help from its partners the Lymphatic Malformation Institute (LMI) and LGDA-Europe, this conference will bring together patients and their families, clinicians, and researchers from around the world to advance patient-driven solutions for complex lymphatic anomalies as part of our development of an international collaborative research network supported through our membership in the Rare As One Network.

Who Should Attend:

• Patients & Families
• Physicians, Nurses, Allied Health Care Providers
• Established Researchers & Post-docs
• Medical & Graduate Students
• Rare Disease Advocates
• Others interested in vascular anomalies

 Basic Science and Clinical Topics:

• Genetic Causes of Complex Lymphatic Anomalies
• Preclinical Models to Study CCLA, GLA, GSD, and KLA
• New Technologies for CLA Research
• Vascular Anomalies Registries
• Treatments for CLAs
• Imaging Features & Biomarkers

This free, two-day event has an exciting line-up of speakers, including VASCERN members Professor Miikka Vikkula (VASCA WG Chair), Professor Leo Schultze Kool (VASCA WG Co-Chair) and Professor Jochen Roessler (VASCA WG member). There will also be several "patient voice" sessions where people living with complex lymphatic anomalies share their unique journeys to diagnosis and treatment as well as their challenges and hopes for the future of research in this field. The full agenda can be seen here.

Link to the event website here

Register here

Due to 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 October 6-8th, 2021 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.

VASCERN Days 2021 will take place from October 7-9th, 2021 in Paris, France. After over a year of conducting online meetings we are happy that this year's VASCERN Days will take place in person and give our members and invited stakeholders a chance to catch up!

We are expecting over 80 participants over this 3-day event including healthcare professionals from our Healthcare Provider (HCP) Full Members and Affiliated Partners, patient advocates from the VASCERN ePAG and various stakeholders representing DG SANTE (European Commission), FAVA-Multi (The French Network for Rare Vascular Diseases), Eurordis, members of our VASCERN Registries Project team, EJP-RD, Fondation AP-HP, AP-HP Bichat Hospital and more!

Access the full, detailed program here

The ERN Coordinators Group Meeting will take place on October 22nd, 2021 from 8:30 AM to 4 PM (CET) in Strasbourg (France).

The PIK3CA Related Conditions International Scientific Meeting is hosted and sponsored by CLOVES Syndrome Community and will take place online from October 28th to 29th, 2021.

This meeting will focus on the diverse range of phenotypes of the spectrum that share a PIK3CA mutation.

The goals for this meeting are:

• To bring together the experts in the PIK3CA pathway including clinicians, clinical researchers and basic scientists to allow opportunities to present new information, share data, foster collaboration and encourage networking.
• To stimulate new ideas.
• To encourage new researchers to enter the field, to collaborate with others in the field and to collaborate with our patient organizations.
• To identify the gaps and unmet needs for our heterogenous patient populations.

Professor Miikka VIKKULA, Chair of our Vascular Anomalies Working Group (VASCA-WG), is one of the Scientific Meeting Chairs.

For more information on this event (abstract submission and registration), take a look here.

The 10th International Conference of the International Lymphoedema Framework will take place in Copenhagen, Denmark, from November 18-20th, 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.

See the preliminary programme here.

For more information, check out their website here.