Rare Lives

Rare Lives

In Europe, 30 million people suffer from a rare disease. "RARE LIVES" is a photographic journey across Europe that want to investigate the daily lives of those who suffer from a rare disease. The needs of patients, their hopes, their difficulties, but above all their joys and their daily achievements.
This project wants to give them visibility, strength and attention. It wants to build a network combining the experiences of those who live this condition and that involves those who do not live.

by Aldo Soligno

In Europe, 30 million people suffer from a rare disease. "RARE LIVES" is a photographic journey across Europe that want to investigate the daily lives of those who suffer from a rare disease. The needs of patients, their hopes, their difficulties, but above all their joys and their daily achievements.
This project wants to give them visibility, strength and attention. It wants to build a network combining the experiences of those who live this condition and that involves those who do not live.

Grottaglie. Italy. Roberta 3 years old. Roberta is affected by SMA, Spinal Muscular Atrophy (Spinal Muscular Atrophy is a disease of the nerve cells of the anterior horns of the spinal cord. From these cells (motor neurons) leave the direct nerves to the muscles, especially those closest to the trunk. SMA therefore, limits or prevents activities such as crawl, walk, check the neck and head and swallowing). Despite its difficulties Roberta follows since almost a year a dance class twice a week, re Wieliczka. Poland. Ola, 13 years old, affected by Leigh Syndrome. Wroclaw. Poland. Roman, 45 years old, suffering from Fabry's Disease. Copenhagen. Denmark. Maggie, 15 years old, suffering from William Syndrome. Bièvres. France. Charline, 4 years old, suffering from Rett syndrome. Aarhus, Denmark, Marie, 17 years old, suffering from Osteogenesis Imperfecta. Romania. Constanta. Angela, 31 years old suffering from Pompe Syndrome. Wieliczka. Poland. Ola, 13 years old, affected by Leigh Syndrome. Lisbon, Tomas, 20 years old, suffering from Emery Dreifuss Muscular Dystrophy. Paris. France. Luis, 17 years old, suffering from Pseudoachondroplasia. Bièvres. France. Charline, 4 years old, suffering from Rett syndrome. Aarhus, Denmark, Marie, 17 years old, suffering from Osteogenesis Imperfecta. Paris. France. Luis, 17 years old, suffering from Pseudoachondroplasia. Naestved. Denmark. Christina, 52 years old, suffering from Fabry disease. Groningen. Netherlands. Marlou Schenk, 23, suffering from Fabry's disease. Romania. Constanta. Angela, 31 years old suffering from Pompe Syndrome. Italy. Modena. Dino suffering form pulmonary idiopathic fibrosis. Groningen. Netherlands. Marlou Schenk, 23, suffering from Fabry's disease. Wieliczka. Poland. Ola, 13 years old, affected by Leigh Syndrome. Lisbon, Tomas, 20 years old, suffering from Emery Dreifuss Muscular Dystrophy. Wieliczka. Poland. Ola, 13 years old, affected by Leigh Syndrome. Bièvres. France. Charline, 4 years old, suffering from Rett syndrome. Naestved. Denmark. Christina, 52 years old, suffering from Fabry disease. Wieliczka. Poland. Ola, 13 years old, affected by Leigh Syndrome. Romania. Constanta. Angela, 31 years old suffering from Pompe Syndrome. Wroclaw. Poland. Roman, 45 years old, suffering from Fabry's Disease. Paris. France. Luis, 17 years old, suffering from Pseudoachondroplasia. Wieliczka. Poland. Ola, 13 years old, affected by Leigh Syndrome. Caltagirone, Sicilia. Giuseppe. 25 anni. Sindrome dell’X Fragile. Qualcuno lo definirebbe disabile, lui risponde con i fatti: palestra, un aiuto in officina, uno in campagna ed equitazione. Tutto in un giorno solo. Aarhus, Denmark, Marie, 17 years old, suffering from Osteogenesis Imperfecta. Copenhagen. Denmark. Maggie, 15 years old, suffering from William Syndrome. Copenhagen. Denmark. Nicklas 21 years old, suffering from Pompe Disease Modena. Italy. Analisa suffering from lymphoedema. Aarhus, Denmark, Marie, 17 years old, suffering from Osteogenesis Imperfecta. Lisbon, Tomas, 20 years old, suffering from Emery Dreifuss Muscular Dystrophy. Paris. France. Luis, 17 years old, suffering from Pseudoachondroplasia. Aarhus, Denmark, Marie, 17 years old, suffering from Osteogenesis Imperfecta. Paris. France. Luis, 17 years old, suffering from Pseudoachondroplasia. Copenhagen. Denmark. Nicklas 21 years old, suffering from Pompe Disease Wroclaw. Poland. Roman, 45 years old, suffering from Fabry's Disease. Groningen. Netherlands. Marlou Schenk, 23, suffering from Fabry's disease. Copenhagen. Denmark. Nicklas 21 years old, suffering from Pompe Disease Modena. Italy. Analisa suffering from lymphoedema. Aarhus, Denmark, Julia 22 years old, suffering from Tuberous Sclerosis. Wieliczka. Poland. Ola, 13 years old, affected by Leigh Syndrome. Bièvres. France. Charline, 4 years old, suffering from Rett syndrome. Wieliczka. Poland. Ola, 13 years old, affected by Leigh Syndrome. Wroclaw. Poland. Roman, 45 years old, suffering from Fabry's Disease. Wroclaw. Poland. Roman, 45 years old, suffering from Fabry's Disease. Rome, Italy. Ola, 13 years old, affected by Leigh Syndrome at Bambin Gesù Hospital. She is part of a sperimental program releated to Leigh Syndrome. Romania. Constanta. Angela, 31 years old suffering from Pompe Syndrome. Grottaglie. Italy. Roberta 3 years old. Roberta is affected by SMA, Spinal Muscular Atrophy (Spinal Muscular Atrophy is a disease of the nerve cells of the anterior horns of the spinal cord. From these cells (motor neurons) leave the direct nerves to the muscles, especially those closest to the trunk. SMA therefore, limits or prevents activities such as crawl, walk, check the neck and head and swallowing). Despite its difficulties Roberta follows since almost a year a dance class twice a week, re