213 ~ Reframe rare – 1/7 ~

Rare Disease Day is 4 days away!

With 2020, being a leap year, we are wanting to make our #RareDiseaseDay celebrations extra special, and we need your support to do it!

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.

People around the world are joining the global movement for rare diseases by taking part in the #ReframeRare campaign, holding events and raising awareness on the positive elements to 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.

We will also send you posters, and ribbons to improve awareness around Rare Disease Day. All participating schools/companies will be featured on our social media platforms.

How can you get involved?

  1. Get your staff/students to purchase aRare Disease Day Ribbon for only R10, the learner/staff member who sells the most ribbons from each participating school/corporate will win a Rare Bear and be featured on our social media platforms and website. Ribbons can be collected from

  1. Become a fundraiser for Rare Diseases SA NPC using our fundraising platform:
    Register at the following link:https://www.givengain.com/fundraise/18430/
    Every R300 raised assists us in tackling a patient query at a medical aid, ensuring they are able to get the treatment they deserve.

  1. Join us in Johannesburg at the Walter Sisulu Botanical Gardens on Rare Disease Day 29 Feb 2020, for our annual #DenimWalk (Join ourFacebook Event for more information)

【Let the enthusiasm & energy of the group be your fuel】And now, for groups of 10 or more, you will get a massive 20% discount…

Simply visit

https://www.quicket.co.za/events/96469-denim-walk-by-night/#/

& use the code 𝐌𝐎𝐑𝐄𝐈𝐒𝐌𝐀𝐆𝐈𝐂 to receive your discount.

***LIMITED TICKETS AVAILABLE***

4.

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

6. Donate at the following www.rarediseases.co.za/donate

We look forward to hearing back from you and thank you for your support for Rare Disease Day 2020. If you have any questions, please don’t hesitate to contact us.

Many thanks,

The Rare Diseases Team

010 594 3844