“Rare Diseases, Leaving no one Behind” – A PHOTO EXPO HONOURING LIFE WITH A RARE DISEASE
Rare Diseases International’s event marking the occasion of Rare Disease Day was opened by an enthusiastic crowd in Geneva on 25 February 2020.
Hosted at the United Nations on the margins of the 43rd Session of the Human Rights Council, the exhibit is made possible thanks to the invaluable support of the Permanent Mission of Cyprus and the Permanent Mission of Brazil.
Ministers from both countries addressed the inaugural ceremony which gathered Member State representatives as well as the rare disease community to give tribute to the millions living with a rare disease.
“Rare diseases are rare, but rare disease patients are many and can be found across the world.”
Read Nikos Christodoulides’ speech
Opening Ceremony – Speakers
- H.E. Mr. Nikos Christodoulides, Minister of Foreign Affairs of Cyprus
- H.E Mrs. Damares Alves, Minister of Women, Family and Human Rights of Brazil
- Mrs. Katia Kyriacou, President, Pancyprian Association of Rare Genetic Diseases “Unique Smiles”
- Mrs. Rachel Yang, Member of the Council of Rare Diseases International
- Mr. Aldo Soligno, photographer of the Rare Lives Photo Project
- Ms. Anastasia Semaan, Youth Ambassador of “Unique Smiles” and Member of European Patient Forum Youth Group
” This exhibition is celebrating everything that we with a rare disease HAVE done, and CAN do and is only a glimmer of what we will continue doing and striving towards. “
Read Anastasia Semaan’s speech
“if you meet a child with a rare disease you will be amazed by their thirst to live a happy life and their stubbornness to make it!”
The exhibition brought together photographic projects realised in partnership with two rare disease patient associations in Italy and Cyprus.
Open 25 February to 6 March 2020
United Nations Office at Geneva (UNOG)
Palais des Nations, Building E, Main Entrance
UNLIMITED POSSIBILITIES is a photographic project that portrays the resilience, dreams and aspirations of people living with a rare disease.
The project is a collaboration between world-class photojournalist Petros Petrides and Unique Smiles a Cyprian civil society organisation that represents patients and families affected by 167 rare genetic disorders.
RARE LIVES is a 5-year photographic journey into the world of rare diseases involving 70 families and crossing 7 European countries. The collection goes beyond the data and socio-health services to shed light on the bravery, strength and adaptability of those living with a rare pathology, whatever their context.
The initiative is the outcome of a collaboration with award-winning photographer Aldo Soligno; his agency, ECHO Photojournalism; and UNIAMO-Rare Diseases Italy, the Italian Federation of Rare Disease patient associations.
“We are happy to meet new partners to defend the rights of people with a rare disease worldwide”
Damares Alves – Minister of Women, Family and Human Rights of Brazil
