Why VASCAPA? 

 
There are no major associations in Belgium or at the european level that group patients affected by vascular anomalies. It was with the intention of grouping patients affected by these rare conditions, their families and friends that VASCAPA was created. The Vascular Anomaly Patient Association (VASCAPA) was born on May 5th 2012 thanks to the  efforts of Professors Laurent Boon and Miikka Vikkula, both also co-founders of the Vascular Malformation Center at Cliniques Universitaires Saint-Luc in Brussels, Belgium. 
 
The objectives for VASCAPA: increase the visibility of these rare diseases, foster a movement of collaboration between patients, contribute to enhancing recognition for these conditions in terms of healthcare organisations and support, promote research in order to increase the hope for patients.
 
Vascular anomalies are commonly referred to as "hemangioma" and affect children and adults of both sexes, without any distinction of ethnical background. There are various types of vascular anomalies, with their common point being that they all affect the development of the blood vessels. They are classified depending the type (or types) of vessel(s) affected, and they cover a large number of different pathologies, both in their nature, as well as in the consequences for the health of those affected. The therapeutic options for treatments are also very different depending on the specific pathology.
 
The prevalence of these disorders also varies significantly: some vascular anomalies, like the flat hemangioma (commonly referred to as port wine stain) may affect as much as 1 person in 10, while other types of vascular anomalies affect less than 1 person in 2,000, and some less than 1 in 100,000. Many are therefore what could be considered rare diseases, largely unknown even within medical communities. This leads often times to late or even wrong diagnostics, and to patients roaming from one medical center to another, sometimes suffering wrong treatments that further complicate their condition. There are not many medical centers with the right skills to treat these conditions, and many are also not well recognised by insurance and healthcare systems. 
 
The therapeutic options for treatment are also very different. In some case there have been advances that contributed to well established treatments. In other cases, there are little options beyond palliative approaches. In general, there is a clear need in terms of research in order to better understand the nature of these diseases. Given that these pathologies are mostly very rare, the echo they have in the media is therefore limited, and the few researchers working in this field face a cruel lack of funding. 
 

Whenever someone faces some of these rare conditions, they also often face lack of treatment, lack of effective or proven drugs, and lack of hope. This is the situation for many patients affected by rare diseases. It is for this reason that VASCAPA invites you all to join us and support us, to bring hope where there is none.