WHAT IS RARE DISEASE DAY?

POWERED BY COMMUNITY CHAMPIONS

Rare Disease Day belongs to all of us. By stepping up as a Community Champion, and help drive equity for people living with rare diseases in South Africa.

CHOOSE 1 SIMPLE ACTION. WE WILL GIVE YOU THE TOOLS. YOU BRING THE HEART.

WHAT IS RARE DISEASE DAY?

Rare Disease Day is a globally coordinated movement dedicated to rare diseases, striving for equity in social opportunities, healthcare, and access to diagnosis and therapies for people living with a rare disease.

Since 2008, it has brought together a diverse, global community – different diseases, different countries, one shared purpose: to make sure no one living with a rare condition is left behind.

Rare Disease Day is observed every year on 28 February (or 29 February in leap years – the rarest day of the year).

THE VISION FOR 2026

This year’s theme is equity.

We often talk about equality – treating everyone the same. But for people living with a rare disease, that’s not always enough.

Equality = giving everyone the same support.
Equity = recognising that people start from different places and may need different kinds and levels of support to have a fair chance.

For people living with rare diseases, equity looks like:

Faster, accurate diagnosis
Access to treatment and specialists
Support at school and work
Being seen, heard and included in decisions that affect them

This Rare Disease Day, we’re inviting you to help make equity visible and real – wherever you live, learn and work.

HOW TO GET INVOLVED...

This year’s theme is equity.

We often talk about equality – treating everyone the same. But for people living with a rare disease, that’s not always enough.

Equality = giving everyone the same support.
Equity = recognising that people start from different places and may need different kinds and levels of support to have a fair chance.

For people living with rare diseases, equity looks like:

Faster, accurate diagnosis
Access to treatment and specialists
Support at school and work
Being seen, heard and included in decisions that affect them

This Rare Disease Day, we’re inviting you to help make equity visible and real – wherever you live, learn and work.

ALL YOU NEED TO KNOW TO MAKE A DIFFERENCE...

This year’s theme is equity.

We often talk about equality – treating everyone the same. But for people living with a rare disease, that’s not always enough.

Equality = giving everyone the same support.
Equity = recognising that people start from different places and may need different kinds and levels of support to have a fair chance.

For people living with rare diseases, equity looks like:

Faster, accurate diagnosis
Access to treatment and specialists
Support at school and work
Being seen, heard and included in decisions that affect them

This Rare Disease Day, we’re inviting you to help make equity visible and real – wherever you live, learn and work. Let’s turn imagination into action. Whether you’re an individual, ambassador, school, influencer, or corporate partner, we need YOU to make a difference.

MAKE YOUR MARK

MAKE RARE VISIBLE,
ONE BADGE AT A TIME

Run a small badge drive in your world and help

raise funds for rare.

Badges are an easy way to start conversations and support RDSA’s work.

Order a batch of badges from RDSA
Sell them at your school, workplace, church, gym or community group
Deposit the money back to RDSA using your unique reference
Take a photo of your badge table / badge selfies and tag us so we can celebrate you.

SELL BADGES FOR RDSA

SIGN UP SCHOOLS & CORPORATES

Use your connections to sign up schools and corporates

to take part in Rare Disease Day.

You don’t have to run the event yourself – you just help us get in the door.

Share our school invitation letter with your child’s school
Share our corporate invitation letter with your HR / CSI / manager
Ask them to complete the quick online sign-up form
Once they’ve signed up, RDSA will support them with ideas, resources and next steps

GET THE TOOLKIT

BRING THE VIBE &
HOST THE TRIBE

Host something small.

Start something big.

When you run a fundraiser or give a talk, you help put rare diseases on the map in your community – and you help us keep showing up for families who need support.

Choose your moment: a coffee morning, dress-down day, school civvies day, market table, sports day, workplace talk, or quiz night
Pick a simple goal
Use our campaign toolkit (posters, key messages, hashtags, and a short “about RDSA” intro)
Take photos and share the highlights on social media

GET HOSTING

SHARE YOUR STORY.
START A SPARK

Your story can spark a conversation

and drive understanding, empathy and change.

Every story is a spark. When you tell your rare journey, you help others see why equity matters – and you remind another family that they are not alone.