On the occasion of the Rare Disease Day, VASCAPA organises a get together between doctors and patients of rare vascular anomalies: Experts from Cliniques universitaires Saint-Luc and Institute de Duve will share news on Vascular Malformations. Patients (adults and children) will share their experiences. You will be able to informally discuss with doctors and other patients/ families. Drink and snacks provided.

 

Free entrance & parking.

 

Date:  Saturday 23 February  from 15h00 till 18h00

Adress: Av. Hippocrate 74, 1200 Woluwe Saint Lambert

Please confirm your attendance by email This email address is being protected from spambots. You need JavaScript enabled to view it.  or phone at 0473 32 15 11. 

 

 

On December 6th we received the great news that the first Generet Award has gone to Professor Miikka Vikkula for his research to find the genetic causes of vascular anomalies. 

The Generet Award is provided for by the Generet Fund, managed by the King Baudouin Foundation, aiming to support rare disease research. The award is worth 500,000 euros to a top researcher in Belgium involved in research focusing on either a specific rare disease or aimed at seeking to understand the causes of various rare conditions. The Generet Award is Belgium’s leading biomedical research prize.

 
 

 

Professor Miikka Vikkula works with a team of top geneticists at the Human Molecular Genetics Laboratory at the de Duve Institute, the multidisciplinary biomedical research centre of the Faculty of Medicine at Université catholique de Louvain (UCLouvain). The award recognises over 20 years of work and success in finding the genetic mutations that causes some vascular anomalies, such as venous or lymphatic malformations.

Professor Vikkula’s candidacy to the award was selected from a list of 28 candidates which were evaluated by an international jury established by the Fund for Scientific Research (FNRS - Fond National pour la Recherche Scientifique) in collaboration with FWO (Research Foundation - Flanders). The award was delivered on December 6th 2018 by HRH Princess Astrid of Belgium and Belgian Federal Minister of Public Health Dr. Maggie de Block. 

 

Photo credit: Emmanuel Crooÿ, This email address is being protected from spambots. You need JavaScript enabled to view it.

 

The award will help continue research in order to find other mutations that may be the cause of other vascular anomalies. Once a mutation is identified, Professor Vikkula’s team can model the disease and experiment existing and/or new drugs in laboratory mice in order to proof efficacy before entering human clinical trials. This is the only hope for many patients affected by these rare and highly invalidating diseases.

This is really good news for vascular anomaly patients and all members of VASCAPA. We sincerely thank Professor Vikkula and his team and congratulate them on a very well received recognition!

 

 

 

Zoe, affected by a Lymphatic Malformation, shares at the award ceremony her positive experience thanks to the treatment made possible by Professor' Vikkula’s research.

(Photo credit: Emmanuel Crooÿ, This email address is being protected from spambots. You need JavaScript enabled to view it.)

 
 

We are back from the ISSVA 2018 Conference!

During the week of May 28th we had the opportunity of attending the ISSVA 2018 conference. The ISSVA is the International Society for the Study of Vascular Anomalies, an organisation that groups specialists in the field and runs biennial workshops/conferences to share information, innovations and best practices.

The program of the event was very intensive over the entire week, the full booklet of all activities is online at the event site. Of particular interest to non-specialists was a full day Primer Course on Tuesday 29th where specialists from around the globe shared information and experiences on a wide range of topics covering diagnostic, treatment options, genetics and more.    

On the main event program there were two type of presentations, oral lectures and poster supported presentations on the main floor. On both type of sessions there was plenty of content of interest covering virtually all vascular anomalies and related syndromes. Many of the sessions are extremely technical in nature, we have to remember that the audience for these is specialists in the field.  In any case, for any patient reading this it is a good idea to scan read the booklet bookmarked above and find sessions of interest for your specific condition and then ask questions to your specialists about whether any news shared could be of interest to you.

This year there was also, and for the first time at the ISSVA event, activities in the program dedicated to patient support organisations. These included:

  • Patient Organisations Course - this was running on Tuesday afternoon and was kindly coordinated by HEVAS. It included sessions on the role of patient organisations in USA, and in the EU within the European Reference Networks (the latter covered by Matt Boltz-Johnson from EURORDIS; and the presentation from 8 different patient organizations from Europe. Shanti Sritharan, Franziska Haiml and Maria Barea attended the session and represented Vascapa. 
  • Poster Presentations (P154, P155 and P156) covering experiences from organisations in the USA and Europe. HEVAS shared an interesting project where they are trying to create an online patient registry for Infantile Hemangioma (IH) from the perspective of the patients, rather than physicians. You can read more about this on the abstract of session P155 if this is of interest to you.
  • An open table area at the event where Patient Organisations could interact directly with the specialists attending the event. Vascapa had a small presence there with one of our members, Juan Lage, covering the table and questions.

 

In addition to that there was an event on Monday evening organized by VASCERN (the European Reference Networks organization), specifically for the VASCA-WG. The main objective was to, in a relaxed environment,  strengthen the contact among doctors from the different Medical Centers of Reference. During dinner, short informative presentations were given to improve information sharing across countries and specialties. Additionally the 4 Patient Organizations active in VASCERN calls were present: it was a great opportunity for our Vascapa members Shanti Sritharan, Franziska Haiml and Maria Barea to create strong links with the other POs representatives, and also interact with doctors.

Franziska Haiml, Maria Barea, Shanti Sritharan and Juan Lage at ISSVA2018

 

The Generet Fund will help fostering research on rare diseases

Every year, the 28th of February is Rare Disease Day, abbreviated as RDD. To mark RDD in 2018, the King Baudouin Foundation launched a new prize destined to further encourage researchers working in the field of rare illnesses: the Generet Award. 
 
The Generet Fund joined over 80 other funds devoted to medical research and managed by the Kind Baudouin Foundation, and is making substantial means available specifically for research into rare diseases in Belgium through the new award. 
 
We must remember that rare diseases affect less than one in every 2,000 people, and 75% of those affected are children or young people. There are over 7,000 known rare diseases, and it is important to to notice that the Generet Fund has not specified which pathology the research awarded must investigate: all rare diseases are valid. 
 
The Generet Award is very considerable, allocating an annual prize of 500,000 euros to be awarded to a leading scientist to fund their research. This amount may even be doubled following a positive intermediate progress report on the research. 
 
This is good news for all patients of rare diseases, including of course all members of Vascapa. Learn more about the Generet Award and other activities carried over by the King Baudouin Foundation by checking their website: https://www.kbs-frb.be/
 
 

ISSVA 22nd International Workshop on Vascular Anomalies

 

The International Society for the Study of Vascular Anomalies (ISSVA) was officially founded in 1992, two years after its first International Workshop held in 1990 in Amsterdam. The ISSVA workshops, held all over the world, gather hundreds of international specialists of various medical disciplines involved in the treatment of patients afflicted with vascular anomalies. These biennial workshops have fostered time proven personal contacts, collaboration, and informal exchange of scientific knowledge concerning vascular anomalies. 

 

 

The ISSVA membership is comprised of the dedicated physicians, scientists, and nurses who attend the workshops and support the fundamental mission of the organization to improve the lives of patients with vascular anomalies.

Next year, 2018, the ISSVA will hold its 22nd International Workshop on Vascular Anomalies, and they return to the very place where it all started, the beautiful city of Amsterdam. 

From May 29-June 1 2018, a wide array of specialists including intervention radiologists, dermatologists, plastic surgeons, ENT surgeons, pediatricians, pediatric surgeons, oncologists and pathologists, will present the latest developments in the study and treatment of vascular anomalies.

This event may be of interest to all of our members, if you want to learn more, please visit the ISSVA website: 

https://www.issva2018.org/en/Home_10_6_12.html

http://www.issva.org/about-issva