We are a group of people with rare diseases, parents, friends and health professionals who all shared from our own point of view, our strong concerns about the huge needs that people with rare diseases have to face.
Needs such as an early diagnosis, expertise, global approach by a group of health professionals, support and information.
Our ultimate goal is to boost the health centers that already exist in our country in order to create a center of excellence for rare diseases. We would save mental and financial costs if the patients or the parents arrived from a compatible path to the specialized groups for a n early diagnosis and proper treatment! Many patients and especially parents go from doctor to doctor until they end up to someone who knows or can recommend a specialist.
There should be created policies that recognize the special need for facing rare diseases.
We are a non-profit association with official action since February 21, 2014 under the registration number 4038.