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.

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

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

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 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 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.

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.