Our Voice for Rare Diseases 2022

in support of Rare Diseases South Africa

Since 2017, Our Voice for Rare Diseases is an annual fundraising and awareness-raising event, which brings together members of our school community in support of the research on rare diseases. 

Collectively, rare diseases aren’t rare! 1 in 17 people, or 7% of the population, will be affected by a rare disease at some point in their life. Some diseases include rare cancers, cystic fibrosis and Huntington’s disease.

The La Grande Boissière Parent Teacher Association is very happy to invite the community for their first gathering event since Covid!

On 16 December 2021, the UN adopted the first-ever UN Resolution on
“Addressing the Challenges of Persons Living with a Rare Disease and their Families.”

On Thursday 2 June 2022, we will celebrate the adoption of this Resolution through a live and colourful programme. All proceeds collected will go to Rare Diseases South Africa, a non-profit organisation founded in 2013. Its mission is to ensure that people living with rare diseases and congenital disorders experience greater recognition, support, improved health service and better overall quality of life. Did you know that 1 in 15 South Africans are affected by rare diseases? Learn more on https://www.rarediseases.co.za/

Programme

Venues : Centre des arts Auditorium ; area outside the Centre des arts

• 15:30 – Intro song by Year 3 students 
• 15:50 – Visioning of OUR VOICE film made on 31 March
• 16:10 – Dance performances  
  • Y3 students 
  • Year 4 and year 7/8 (ECA dance students)
  • Unique dance by Delphine (ECA dance instructor) & Diwele Molale (performing artist from South Africa)
• 16:45 – South African dance workshop with Delphine and Diwele
• 17:30 – Wine and cheese with live music by Dr Conrad Hughes and his wife, Estelle