Meet rare heroes
19 February 2021 - 06 March 2021
Kollárova 11, Pezinok, Slovensko
Hosted by Slovak Alliance for Rare Diseases
Meet rare heroes:
• Anna, Alkaptonuria: "I am no longer lonely with my rarity - science has intervened!"
• Ingrid, Cystic Fibrosis: “Quality treatment along with exercise allows us to live, not experience and
age slowly. "
• Martina, Marfan syndrome - happy mother of 7-year-old Matejko: “The disease changed my view of the world. I accept with gratitude, which is obvious to many. "
• Petra: Systemic lupus erythematosus: “I want to show you that you can exercise even with a chronic illness, even if it is rare.
• Sebastián: Spinal Muscular Atrophy: “I can't buy health for money. But I take life with humour. "
• Martinka, Cystic fibrosis: “ It is important that you join, not if you succeed."
•Barbora, Systemic lupus erythematosus: “We started crèches, here I live my dream. When my illness hits, I can't give it up.“
"The difficult times we live in today show us not only the importance of science and research but also solidarity with the most vulnerable. The maturity and strength of society also depend on how we can take care of the most vulnerable. The better we do it, the stronger the system we build.
Up to 70% of rare diseases affect children and 20% of rare diseases can only develop or manifest in adulthood. Each of us can become a patient and we do not choose diseases - even rare ones. As one of the 62 national alliances in Europe, we are here for those who need help, but also for those who want to help. ”Says Tatiana Foltánová, the expert guarantor of the Slovak Alliance of Rare Diseases, Faculty of Pharmacy, Comenius University in Bratislava.