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.
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 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:
Past Saturday October 1st 2011, the Vascular Malformation Center of the Cliniques Universitaires Saint-Luc celebrates its 20 years of existence in Brussels.
The center, internationally recognized as a reference, conducts over 2,000 consultations on a yearly basis for patients affected by different vascular anomalies. At the celebration event, the center organized a day seminar for doctors and patients to shared information about these rare diseases and recent options for treatments. It is at this event that was announced the creation of a patient organization, VASCAPA (Vascular Anomalies Patient Association). The members of VASCAPA set out with the objective of group those suffering from vascular anomalies.
"The life of an american baby was saved thanks to belgian specialists at Cliniques Universitaires Saint-Luc, in Brussels. The baby is affected by a rare disease that their doctors in the United States had not been able to dianose ...".
It is using these words that a TV report from RTL.info.be tells the story of an american family from Seattle that has found new hope. Professors Laurent Boon and Miikka Vikkula, founding members of VASCAPA, were able to propose the right diagnostic and treatment options for their baby.