VASCERN Newsletter #50 - June/July 2021

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 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 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.