VASCERN Newsletter #49 - May 2021

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).

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 EJP RD - European Joint Programme on Rare Diseases ERN Workshop - Advances in diagnostic and therapeutic methods for lymph flow abnormalities will take place from September 9-10th,  2021 at Radboud University Medical Center, in Nijmegen, the Netherlands.

"The aim of this workshop is to learn about lymph anatomy and physiology as well as diagnostic and therapeutic options available for rare disease patients with lymph flow disorders (lymphatic malformations, central lymph edema, Noonan syndrome and several others), with a specific attention to the innovative intranodal MR lymphangiography technique. This workshop will be an opportunity for participants to network and get acquainted with each other in order to collaborate in clinical and preclinical research studies involving this technique."

It will be hosted by Dr. Willemijn Klein (Radboud University Medical Center Nijmegen), member of the Vascular Anomalies Working Group (VASCA WG), grant recipient of the first EJP-RD Research Training Workshop Call. Other VASCERN members will also be speakers at this event, including Professor Leo Schultze Kool (VASCA WG Co-Chair) and Dr. Robert Damstra (PPL WG Chair), Dr. Friedrich Kapp (VASCA WG member) and ePAG patient advocate Aaike van Oord (LGD Alliance Europe).

See the Programme here

For more information on the workshop and to apply, click here

Deadline to apply: May 31st, 2021

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/

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.

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.