World Rare Disease Day (World Rare Disease Day) is celebrated every year on the last day of February. The intention that is intended to be achieved with the existence of this day is to sensitize society and national institutions and around the world about these rare diseases, as well as to raise awareness about the situation of inequity that families live and the problems that in many cases it means getting the necessary treatment.
Thus, every year, thanks to organizations such as the Spanish Federation for Rare Diseases (FEDER), in coordination with the European Organization for Rare Diseases (EURORDIS) and the Ibero-American Alliance for Rare Diseases (ALIBER), an awareness campaign is created in the More than 300 Spanish entities participate that organize more than 200 activities throughout the country. The European Commission has increased its participation in this type of initiative, but the lack of funding continues to be one of the major problems to be solved .
According to the ERDF, among the objectives of this social campaign, which has been organizing since 2009 , are: transmitting the importance of work in the RED in addressing people with rare diseases, transferring the consequences that the current care model entails through specific situations where a violation of rights is transmitted, guarantee access for all people with rare diseases to the benefits included in the Basic Healthcare Portfolio , position the group of people with rare diseases as active agents of change or strengthen and enhance the solidarity network with people with rare diseases.
The presence of these diseases, especially in cases in which parents see that their children suffer from one of them, usually causes isolation . However, associations such as EURODIS try to promote communication and the emergence of a community in which different experiences can be shared or informed about possible new treatments and studies. The low number of people affected by this type of disease makes it very difficult to carry out clinical trials and international communication is one of the most used ways to solve it.
World Rare Disease Day takes place throughout Europe, the US, Latin America, Canada, and Asia.
What is considered a rare disease?
It is the disease that affects a small global number of people . In Europe, for example, it is considered a ‘rare disease’ that harms 1 in 2,000 people . These include: Ebstein’s anomaly, Moebius syndrome, Bardet-Biedl syndrome, Chediak-Higashi syndrome, Hermansky-Pudlak syndrome, Gaucher disease, Huntington’s disease, triple syndrome X, KBG syndrome, Wolman disease, or Cockayne syndrome. One of the rarest is Opitz trigonocephaly, which has one case per million people .
