Rare Diseases South Africa NPO 120-991

17/09/2026

World Patient Safety Day 2026 | 17 September

Patient safety is everyone’s responsibility. This , we join the global call for Safe Care for Noncommunicable Diseases, highlighting the importance of quality, people-centred healthcare for all.

Achieving safer care requires collaboration between governments, healthcare systems, healthcare professionals, patients, caregivers, and communities.

Together, we can build stronger health systems and ensure . 💙🧡

16/09/2026

Your brand could ride for a cause! 💜

We’re excited to see our Ride4Rare 2026 jersey coming together, with valuable sponsor logo opportunities still available.

A big thank you to Hydromobile for proudly sponsoring the side panel. There’s still time for your organisation to be part of this journey and help make rare diseases visible at Ride Joburg 2026.

📩 Contact us to secure your logo placement before the big reveal.

Your Logo. Your Impact. Your Ride. 🚴🏽‍♂️

The 2026 Ride4Rare Jersey is coming soon, and your brand could be part of the journey!

We've kept the design under wraps for now, but one thing is certain: this jersey will carry more than riders. It will carry awareness, advocacy, and hope for the rare disease community.

🌟 Limited sponsorship opportunities available
🌟 Side panel proudly sponsored by Hydromobile
🌟 Get your logo seen by cyclists and supporters across South Africa

Claim your spot before the big reveal and ride alongside a cause that changes lives.

Contact us today to secure your jersey sponsorship.
[email protected]

16/09/2026

We do too much. There. We said it.

Rare Assist. Patient navigation. Patient resources. Education. Awareness. Support groups. Policy change. Stakeholder engagement. Media campaigns. The RD Action Plan. And yes… even getting people to put on lycra and exercise for rare diseases. 😂

We’re a small team with a very big mission.

And when funding is tight, we have to make difficult decisions about where we put our time, our people and every rand we receive.

So we thought we’d ask you:

If you had to choose TWO things for RDSA to stop doing… what would they be?

Asking for a friend. The friend is our budget.

👇 Tell us your two in the comments.

This isn’t a trick question.
But we genuinely want to know what matters most to the people we serve and the people who support us.

Because the uncomfortable truth is:

We can’t keep doing more with less forever.

So yes. We asking the uncomfortable questions.

Rare diseases are complicated. But getting support shouldn’t be.

15/09/2026

September is Achalasia Awareness Month 💗

This September, we shine a light on Achalasia, a rare condition that affects the oesophagus and can make swallowing food and liquids difficult.

By raising awareness, we can help promote earlier diagnosis, greater understanding, and stronger support for individuals and families living with Achalasia. Every story shared and every conversation started brings us one step closer to a more informed and compassionate community.

Together, let's raise awareness, inspire hope, and support those navigating life with Achalasia.

#

15/09/2026

So… this is awkward.

We don't really like asking.

We'd much rather tell you about the impact we're making, the patients we've helped, the advocacy wins, the projects we're building and the difference this community is making.

But sometimes you have to stop pretending everything is fine.

It isn't.

Rare Diseases South Africa is struggling financially.

We have bills.
We have salaries.
We have technology.
We have programmes.
We have patient services.
We have a team that needs to keep going.

And, most importantly, we have people who need us.

We are doing everything we can to stretch every rand.

But we can't stretch it forever.

So yes…

This is us asking for help.

If you can donate, thank you.
If you can share, thank you.
If you can connect us with someone who can help, thank you.

And if you can't do any of those things, that's okay too.

Just knowing that people understand why this work matters means a lot.

💜 Rare shouldn't mean unsupported.

14/09/2026

You don’t have to donate.
You just have to choose us.

Sometimes making a difference can be as simple as making a choice.

With Woolworths MyDifference, you can select Rare Diseases South Africa as your chosen cause. There’s no extra cost to you. You simply shop as you normally would, and your everyday shopping can help support our work.

Now imagine if every patient and parent in our community asked 5 people to do the same.

That small choice could generate around R120,000 a year for RDSA.

Small choices.
Shared by our community.
A very big difference. 💜.

Link to choose us: https://www.woolworths.co.za/content/look/mydifference-get-back-give-back/_/A-cmp215553

14/09/2026

✨Word of the week;

"Don't watch the clock. Do what it does. Keep going." - Nomsa Mtshali🩵

12/09/2026

Only 2 weeks to go until our Family Picnic Day! 🎉

We're counting down the days to a wonderful afternoon of connection, laughter, games, and special memories with our rare disease community.

Pack your blanket, bring your smile, and get ready to enjoy a day filled with fun for the whole family. We can't wait to see familiar faces and welcome new ones too!

12/09/2026

When the bank balance is lower than the Airlink flyover. 🫠

If you know, you know.

There is a particular kind of panic that comes from looking at your organisation’s bank balance while knowing exactly how many people are relying on you.

We’re a small team.

But the need is BIG.

Every month, we support thousands of people affected by rare diseases through patient navigation, information, advocacy and support.

And every month, we have to find a way to fund that work.

We’re incredibly grateful to the funders, partners, members and donors who make it possible.

But right now, we need more help.

Not a fancy campaign.
Not a glossy appeal.

Just an honest conversation:

RDSA is struggling to make the numbers work.

If you’ve ever wondered whether your donation makes a difference…

It really does.

💜 Rare shouldn’t mean unsupported.

11/09/2026

The Budget has spoken and apparently, one of us has to go.

We thought we’d let you decide.

These are the people behind the emails, calls, patient support, community engagement, advocacy, awareness, events, WhatsApps… and the occasional minor crisis. 😅

We would like you to tell us who is your Favourite, in the comments. 👇

Vote carefully though, as your choice may determine who gets fired.

Just kidding. Mostly. 😂

Behind the chaos is a team that cares deeply about making the rare disease journey a little easier for the people we serve.

Different skills. Same mission. 💜

And yes… we are still fundraising. Because apparently keeping seven people employed is expensive. 😉

Rare diseases are complicated. Getting help and support shouldn’t be.