Reframing Rare Diseases on Rare Disease Day 2020
1 February 2020, Johannesburg, South Africa – The countdown has begun to Rare Disease Day 2020 on 29 February.
People around the world are joining the global movement for rare diseases by taking part in the #Reframe Rare campaign, holding events and raising awareness.
There are over 7,000 rare diseases affecting over 350 million people worldwide. Medical expertise and knowledge on rare diseases is scarce and scattered across borders. People often wait years for a diagnosis and struggle to access the medicines or care they need.
In line with this year’s theme of “Reframing Rare”; Rare Disease Day 2020 is an opportunity to be part of a global call on policy makers, healthcare professionals, and care services to better coordinate all aspects of care for rare disease patients and families and dispel the myths and misconceptions around rare diseases.
Rare = Strong. Patients with rare diseases live a life of continuous health challenges, and continued illness, yet they remain strong and courageous, fighting daily with grit and determination.
Rare = Many. With latest prevalence studies showing rare diseases impact approx. 3 million South Africans, Rare patients are many.
Rare = Proud. As a community, we should no longer stand for the stigmatization and exclusion of rare disease patients in society. We should be proud of rare patients and their achievements.
Rare Disease Day is for everyone – individuals and families directly affected by rare diseases, caregivers, medical professionals, policy makers, companies, researchers and members of the general public can all get involved to show their support for the global rare disease community.
Get involved throughout the month of February!
- Purchase a Rare Disease Day Ribbon for R10 via our distributors or Online Store (minimum order of 20 required to include free delivery via Pep PAXI service)
- Join us in Johannesburg at the Walter Sisulu Botanical Gardens on Rare Disease Day 29 Feb 2020, for our annual #DenimWalk (Join our Facebook Event for more information)
- Get educated on various Rare Disease facts by following our #ForFactsSake campaign on our social media platforms throughout the month of February.
- Donate to RDSA NPC at the following www.rarediseases.co.za/donate
About Rare Disease Day
A patient-led campaign, Rare Disease Day was launched by EURORDIS and its Council of National Alliances in 2008 and brings together millions of people in solidarity. EURORDIS leads the global community in organizing Rare Disease Day, which takes place on the last day of February each year to raise awareness of the impact that rare diseases have on over 300 million people around the world.
This will be the 7th year that South Africa formally participates in Rare Disease Day.
Rare Diseases South Africa NPC
Rare Diseases South Africa NPC fights to have rare diseases recognized and treated.
By connecting patients, families and patient groups, as well as by bringing together all stakeholders and mobilizing the South African rare disease community, Rare Diseases South Africa strengthens the patient voice and shapes research, policies and patient services.
Improving quality of life takes advocacy, support for research and medicine development, facilitating networking amongst patient groups and caregivers, raising general awareness with key stakeholders and the broader community and providing a platform for key discussions when it comes to inclusive healthcare.
RDSA NPC considers a disease as rare when it affects less than 1 in 2,000 citizens. Over 6,000 different rare diseases have been identified to date, affecting an estimated 3 million people in South Africa and over 350 million worldwide. Due to the low prevalence of each disease, medical expertise is rare, knowledge is scarce, care offering inadequate and research limited. Despite their great overall number, rare disease patients are the orphans of health systems, often denied diagnosis, treatment and the benefits of research.
Kelly du Plessis
CEO – Rare Diseases South Africa NPC