Today is Rare Disease Day (February 29, 2020)
A rare disease is defined as a condition that affects 1 person at most out of 2000. Currently we know about 6000-8000 rare diseases and 50-75% of these diseases develops in childhood. These diseases can be accompanied with severe pain, decrease in health and disability, also the everyday life of relatives can be difficult as well. The biggest problem is that there is very little information regarding the diseases and the treatment options, in most cases only symptomatic treatments are available, but there is no definitive cure. 80 % of the diseases are genetic origin diseases and unfortunately decrease life spam, 30 % of people with rare diseases die before they’d turn five.
The purpose of Rare Disease Day is to spread knowledge regarding rare diseases and improve social acceptance. On that occasion the Hungarian Federation of People with Rare and Congenital Diseases (HUFERDIS) organises annual conferences and family charity programs, the event will be held at The Museum and Library of Hungarian Agriculture on the 29th of February. This year the „equality and equity” will be the main focus of the event.
People with rare diseases often meet with discrimination, because most people have very little knowledge on how to help them. Because of the lack of knowledge it can be intimidating for some people to meet with people with rare diseases for the first time.
It is important to educate yourself on this subject, because all kinds of help is valuable. We encourage our patients to show up to this event, if they can.