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Shining the Light on Rare Diseases in South Africa



This year for World Rare Disease Day (WRDD) on the 28 February 2022, Rare Diseases South Africa (RDSA) is redefining what it means to be “RARE”. Because we all are!

Can you touch your chin with your tongue, do a cartwheel or solve maths problems quickly? Maybe you can solve a Rubik’s cube in a flash? Rare traits aren’t limited. Every one of us has special qualities.


RDSA is calling on South Africans to #ShareYourRare be a part of #RarenessAwareness and join the global chain of lights to shine the light on “RARE” and generate change for the 350 million people worldwide living with a rare disease, their families and carers.




Last year, over 500 buildings lit up all over the world in the Rare Disease Day colours during the Global chain of lights campaign. This year, RDSA is inviting everyone in South Africa to #lightupforrare. Share a light at the annual Denim Walk, light up your home, school, Church or business at 7pm on 28 February 2022. By shining a beacon, you will show your solidarity and help to raise awareness for RARE.


In this, the ninth year in which SA will celebrate February as World Rare Disease month, we will once again see people, who are either living with a rare disease or caring for someone who has a rare disease, family and friends donning their denims, takkies and sharing a light to connect with each other and raise awareness of the issues around rare diseases.




“We want to flip the script and tell positive stories of miracles, rare feats, rare facts, rare places and rare people. In every story there is a silver lining. In the weeks leading up to the day, we’ll be inviting South Africans to “share their rare” on social media.” Shares, Kelly du Plessis, CEO and Founder of Rare Diseases South Africa.


“Rare is many, rare is strong, rare is proud! Whilst each individual disease is rare, together we are a community of over 4.1 million in South Africa! Yet those living with a rare disease and their families are often coping alone and in silence. Whether they depend on state or private healthcare, many receive little or no financial assistance or specialist care. That’s why RDSA are working hard to save or improve the lives of those 1 in 15 South Africans who will contract a rare disease at some point in their lives.”


Since it was founded in 2013 by Kelly du Plessis, the mother of a child with a rare metabolic disorder called Pompe Disease, RDSA’s goals have been to reach out to SA’s rare disease patients and their carers and raise general awareness of these issues.


“Our aim for 2022 is not only to reach one in 15 but to treat one in 15 people with rare diseases. RDSA is aiming to raise much needed funds to support those affected by Rare Disease and Congenital Disorders in South Africa. Putting people with rare disease on appropriate treatment means they and their carers can make a positive contribution to the economy, rather than drawing on resources that could be used for other social needs.”




Get involved throughout the month of February!

· Purchase your Rare merchandise and share your story - Home | Rare Aware - Share Your Rare

· Get educated on various Rare Disease facts by following our campaign on our social media platforms throughout the month of February.

· Donate to RDSA NPC at the following www.rarediseases.co.za/donate

· Follow @rarediseasessa on Facebook / Twitter / Instagram or LinkedIn.

· Download your digital toolkit Home | Rare Aware - Share Your Rare


About Rare Diseases South Africa NPC

Rare Diseases South Africa NPC fights to have rare diseases and congenital disorders 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.




Rare Diseases Facts

· There are over 7,000 rare diseases described to date affecting over 350 million people worldwide.

· In South Africa, there are approximately 4.1 million people living with a rare disease.

· In South Africa, 1 in 15 people are affected by a rare disease.

· While most (70-80%) RD are genetic and inherited in families, some may be acquired.

· 70% of RD exclusively paediatric in onset (i.e. they only manifest in children).

· Rare isn’t scarce, rare isn’t infrequent, and rare isn’t remote. In fact – rare is not as rare as you think.

· Created by EURORDIS and its Council of National Alliances, the very first WRRD took place in 2008 with events in 18 participating countries.

· National Alliances ensure the coordination of WRRD at a national level, working with patient organisations locally and often organising a national event aimed at policy makers.

· WRRD events have taken place in over 103 countries since 2008.

· South Africa first participated in WRRD in 2010. Since then, patient organisations have launched many successful initiatives.

· The aim of WRRD is to make society aware that millions of people living with a rare disease around the world face inequitable access to diagnosis, treatment, and care.

· WRRD 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 people living with a rare disease.


 

Press contact

Sharon Pruss

Operations – Rare Diseases South Africa NPC

 


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