People with rare diseases in Bulgaria get mobilized

People with rare diseases in Bulgaria get mobilized and create patient associations and support groups until waiting the governmental institutions to put in action the lumpy bureaucratic machine. Tree websites operate actively already: „Life with Cystic Fibrosis (CF)“ is the site of the patient association for CF, www.lifewithcf.org; www.nae.saita.eu is the site for Hereditary Angioedema (HAE); www.cdls-bg.org – the site for Cornelia de Lange Syndrome (Cdls). Those sites are created and moderated by patients with rare diseases themselves and/or by their relatives and friends. Besides giving information on the disease, they build bridges overcoming distances and spaces and turn into a connecting thread among people who suffer in rare diseases and their families.