The theme for Rare Disease Day 2015 is “Living with a Rare Disease”. It pays tribute to patients, families and caregivers who are affected by rare diseases. The slogan “day-by-day, hand-in-hand” evokes the solidarity between families, patient organisations and communities. 28 February 2015 marks the eighth Rare Disease Day and is anticipated to be one of the biggest Rare Disease Days.
Individuals can participate in Rare Disease Day by joining the Jeans4Genes campaign, purchasing a ribbon for R10 and wearing their favourite pair of jeans on 28 February. All funds raised go towards assisting rare disease patients with receiving access to treatment and supportive care in South Africa.
Although Jeans4Genes is the official campaign, there are many other activities which can be done in your local area to raise awareness of rare diseases. Talks and fun activities are held in schools, companies and public spaces. Roadshows are held in the major cities of South Africa and anyone can volunteer to assist on the day. You can also become a Friend of Rare Disease Day by donating funds and promoting the day on their website.
Individuals in South Africa can also observe the day by wrapping trees with turquoise fabric, hosting cake and candy sales or hosting a champagne brunch or breakfast. Rare Disease day is unique in that any member of the public can organise their own event with the assistance of the Rare Disease Society. Participants in over 80 countries are expected to get involved in organising conferences, dinners, walks, media campaigns, concerts and much more.
Illustration: Jaco Stroebel