February 28th was Rare Disease Day coordinated by Eurordis. The campaign continues to grow each year since it was first launched in 2008. Thousands of events were organised over 100 countries and regions to mark the occasion.
On Rare Disease Day we called for increased equity for people living with a rare disease and their families, including greater social inclusion and equity in access to diagnosis, treatment and care.
The community joined together across borders and across diseases to show that;
Rare is many. Rare is strong. Rare is proud!
Here are some of the amazing activities our members organised
The 28th of February was World Rare Disease Day (WRDD). Rare Diseases South Africa (RDSA) wanted to redefine 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 called on South Africans to #ShareYourRare and 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 for Rare Disease Day 2022 we called on everyone to help the rare disease community be united to join the chain of lights across the world. Together we lit up our monuments, our public spaces, our buildings, homes, hospitals, and more to show our resilience and strength towards a better tomorrow. Collectively, we can improve the lives of the #1in15 South Africans living with a rare disease and the more local and national buildings and monuments illuminated, the bigger the impact!
We partnered with Sandton City Tower, The Voortrekker Monument, The Cape Wheel and in celebration of the 4.1 million South African’s living with rare diseases.
On this day, the volunteers of the UFA organization distributed booklets on Rare Diseases Day, to spread awareness about rare diseases to the citizens of the city! After that, doctors, patients and important people of the city attended a meeting at the Azimut Hotel-Ufa conference hall. Which was organized by the Interregional Public Organization of Patients with Fabry’s disease and Other Rare Diseases “Road to Life. Doctors spoke about rare diseases, patients about their lives with rare diseases, important people about the prospects of treatment and rehabilitation of patients with rare diseases! At the end of the meeting, helium balloons were launched into the sky, in solidarity with rare people (patients) all over the world!
FEMEXER, the Mexican Rare Disease Organization organized multiple activities for Rare Disease Day. You can find a detailed overview on their website.
David Peña Castillo, president of FEMEXER, spends a few minutes clearly explaining what happens when patients do not pay attention to their health rights, either due to negligence or ignorance in this Youtube Video. He speaks about the great responsibility of patients to demand what is theirs by right.