How Social Media Has Changed Rare Disease Advocacy

In this digital age,  rare disease issues have become more prevalent and more visible.  According to Eurordis, a rare disease affects less than 1 in 2000 people.  There are more than 6000 known rare diseases in the world.

At least, that’s the ones that are named. But in the advancing world of social media, we have to ask:  How has it changed advocacy for rare disease patients?

Increased Accessibility

It started with the rise of the internet. A rare disease diagnosis was often lonely, with people limited to connecting to researchers and possibly finding another person or two with the same disease via them. Finding a tightly knit community was not easy.

Now, typing the name of your disease into a Google search will not only reveal the latest research but also connect you with patients, researchers, and even support groups and foundations dedicated to your screen within seconds.  The internet has raised the visibility of rare diseases and made it easier to share your experience with others.

Compassionate, evidence-based communities exist with the sole purpose of connecting patients to research, doctors, and each other. People can find rare disease communities faster than ever, all because they have access to the internet.

The Latest Research

As fast as research is published, it’s available online – and in a lot of cases, it’s available online before in print. Rare disease patients can access some databases online, but they can also see the researchers leading their field and contact them directly via email.

In 2020, Elsevier gave access to their databases to celebrate Rare Disease Day, waiving fees so that patients could get vital information about their disease.

But also within social media communities, papers are posted, information is shared, and these groups help each other with hints, tips, and knowledge to bring to their care providers. Social media has given access to what previously was held in libraries and research facilities, improving patients’ ability to advocate for themselves with the latest research.


Within my own foundation, we run routine checks online and post the latest research with pride. We want people to have access to twin anemia polycythemia sequence information and the related diseases, and we help them find it.

It’s vital to remain up to date. You can’t promote outdated ideas or treatments without science behind them.

People are inherently clever. They can research things for themselves and see no substantiating evidence, meaning you can lose respect as a community. Social media means that foundations and rare disease communities are held accountable in their advocacy.

Easy Connections

Social media has removed the world’s borders, and you can easily talk with someone halfway across the globe and share experiences. You can quickly speak about joint problems, share findings from your treatment team, and formulate advocacy plans together.

But social media also connects advocates and professionals. These platforms can connect researchers with passionate patient groups, who go on to write papers, establish partnerships, and join forces to advocate together.

In my advocacy, I’ve been a part of a priority-setting partnership and helped write not one but two papers. I traveled to London for the first, and my partners in the papers are based in the US. (I live in the Netherlands). Social media was how I connected with both groups of people.

It shows that with the rise of social media, connecting advocates is a much more straightforward, streamlined process.  The digital age is making people accessible and connecting passionate advocates with each other.

Expanding Fundraising Options

Social media offers more opportunities for rare disease communities to raise money for vital research and helping their communities. The rise of Facebook fundraisers and crowdfunding platforms means that stories can be shared, and a personal connection to the people behind the diseases can be made.

Donors feel connected to the story, and can receive updates in real-time about the cause they are supporting. Social media connects stories to potential donors.

Changing Perceptions

Rare diseases are no longer in the dark! You can share your rare on your awareness day and tell people about the challenges, the facts, and even the high points of your story.  Rare diseases are no longer closeted or in the back of people’s minds.  Active foundations produce quality information about their condition and raise awareness every day of the year.

Awareness Days are brilliant for highlighting the problems faced by the communities, raising funds for research, and even just putting rare diseases into the wider community. We celebrated the first official International TAPS Day on March 3rd, 2021, and we reached almost every continent with our messaging.

Social media has brought rare diseases to the forefront and raised awareness of the challenges they carry. It connects vulnerable communities worldwide and helps them make changes in their own diagnosis. It drives advocates to create positive change and keeps them accountable to their communities.

But most of all, social media is an advocacy tool that brings people together and helps them connect with research and each other.

Fueling Passions

For all the reasons above and many more, social media is connecting passionate advocates to each other and creating strongly unified teams.

The rare disease battle used to be a solo effort, but now with the rise of different social media platforms, groups unite and celebrate together to raise the profile of all rare diseases.  Celebrations like Rare Disease Day unite all communities across the world.

But there is really nothing quite like meeting another person with the same diagnosis as yours and sharing your stories.  I still get a buzz when someone joins our community, and we have a similar diagnosis, a shared account, or even a shared doctor! These small connections fuel my passion for making sure that no one is ever alone in their diagnosis and help me be a better advocate.

The more passionate people connected via social media means the more changes that can be made to how our diseases are diagnosed and followed up.

Social media has made a significant impact on how we perceive and communicate about rare diseases. As communities grow and more people connect with the messaging from advocacy groups, the more awareness about the struggles and issues the rare disease community can raise.

It may not seem like it, but social media has positively impacted the rare disease community through awareness, advocacy, and compassion.

Stephanie Ernst

Stephanie Ernst

Who am I? I'm Stephanie Ernst, TAPS nerd and founder of the TAPS Support Foundation My passion for raising awareness for Twin Anemia Polycythemia Sequence comes from my own TAPS journey. My daughters were born at 31 weeks at the LUMC in Leiden, and my mission is to support research into TAPS, as well as connecting families diagnosed. Everyone should have access to the latest information and research about TAPS so they can advocate for the best level of care. And most importantly, no-one should ever be alone in their TAPS journey. Find our Facebook group here.

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