OUR VOICE FOR RARE DISEASES
28 février 2019 à 15h45
15h45: Rare Disease Day 2019 Video Display
15h50 - 16h00: Les Petits Loups du Pop
16h05 - 16h15: Presentation of the book Noé et Noa by Primary School students
16h20 - 16h55: Primary School Choir, with classes 3A, 3B, 3C, 4FA and 4FB
17h00 - 17h40: Panel discussion with invited speakers
- Dr. David Hawley - Directeur général, Ecole Internationale de Genève
- Mr. Frederick Morel - Founder, Fondation Sanfilippo Suisse
- Mrs. Anais di Nardo - Mother of Liam, Fondation SanFilippo Suisse
- Beatrice Geissbuhler - Information Scientist, Orphanet, HUG Génétique
- Dr. Stylianos Antonarakis - HUG Génétique
- Dr. Anne Mornand - Equipe de l'unité de pneumologie pédiatrique, HUG
- Mme Nadège Gabent - Infirmière spécialisée mucoviscidose, HUG
17h45 - 18h20: Middle School Choir / Choeur de la maîtrise avec les classes 5AB, 5BB, 6AB, et 6BB
18h30 – 20h30: CF Night of Talent
‘’OUR VOICE for Rare Diseases’’ is a fundraising event which will take place on the World Day for Rare Disease on 28 February.
This event is the third of its kind in our school community, and is organised with the support of our Parent Teacher Association (PTA). The event will include choir performances from the Primary and Middle schools, and a talent show by Secondary School students. For the first time this year, we will host a panel discussion on rare diseases with experts in this field, and moderated by Secondary School students who are interested in medicine. The Primary School will also share a children’s story on rare diseases. Open to all, this event promises to be a welcoming, informative and fun event for our community.
We hope to see many of you join us in showing our community’s commitment to this global campaign to build awareness of rare diseases.
A rare disease is defined as a condition that affects fewer than 1 in 2,000 people and requires special combined efforts to manage it. There are more than 7000 listed rare diseases. Research is crucial in providing patients with the relief that they need, whether it be in the form of a treatment, a cure or improved care, or simply a better understanding of the disease. On 28 February 2019, the 11th edition of Rare Disease Day will see thousands of people from all over the world come together to advocate for more funds for research on rare diseases.
Proceeds raised will go to the Fondation Sanfilippo Suisse, to the Société Suisse pour la Mucoviscidose (CFCH) and to the portal for rare diseases of the Hôpitaux Universitaires de Genève (HUG), Orphanet. We are delighted and privileged to welcome representatives from these associations to our event.