I will be running the Athens Marathon(11 November, 2018) which will be my second time, after Amsterdam’s marathon in 3 weeks.Any of donations of any amount will be gladly received. Help us to make a difference.Feel Free to Share:
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 nearly diagnosis and proper treatment! Many patients and especially parents go from doctor to 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.