Natalie Lanyon

We’re told from a young age that individuality is to be celebrated; it’s good to stand out from the crowd, we should embrace individuality and develop our own personalities.

But what happens when that individuality is due to our health, something that may be a source of confusion and vulnerability?

There are more than 300 million people living with one or more of the 6,000-plus identified rare diseases around the world. Yet these people often feel isolated, navigating a complicated and lengthy diagnosis process to find the right treatment and care.

I’ve worked with families who felt that, because there’s not a defined treatment pathway for them, or a large, national charity raising money, or their condition has a name that no-one has heard of, they’re being left behind.

Actively listening to patient needs

As healthcare communicators, we can help. First and foremost, it’s about giving people a voice and a platform to be heard. We can do that through patient advocacy and it’s important that we work with patient organisations to make sure we fully understand the needs we’re trying to address.

It means asking the right questions and being ready to listen, not presuming that what’s worked for one patient group will work for another.

Tailoring the solution

We need to understand that patient pathways are not always the same, especially for those with rare diseases. Providing signposts so that people don’t feel that they’re navigating a path that hasn’t been taken before can really help.

We can develop resources that guide them to places where they can find the right support, or provide answers to the most pressing questions.

Connecting patients through social media

We can also help build communities that patients and their families feel part of. Social media channels offer an incredibly powerful way for people across the world living with rare diseases to come together and form meaningful relationships, no longer constrained by geography and time zones.

While it’s important to put the right processes in place to monitor social channels, we know from campaigns we’ve delivered that patients helping patients is extremely powerful, and perhaps even more so when they might be only one of a handful of people with the condition.

The patient’s perspective

With rare diseases, the patient often becomes the expert in their condition. So how can we best harness this knowledge to elevate our communications campaigns so they really make a difference?

We’ve worked with patients to author articles for websites or newsletters, offering advice from personal experience and offering some reassurance to others who may be having similar experiences. Film is also a powerful tool because it gives you the chance to bring a patient’s story to life in their own voice.

Supporting HCPs too

As healthcare communicators, it’s important that we don’t focus purely on the patient but also consider how we include the healthcare professional.

Helping HCPs navigate a condition they may only come into contact with a handful of times during their careers cannot be overlooked. We can educate and empower patients, giving them a platform for their voices to be heard, but doctors, nurses or other specialists need to be armed with the right information too.

No matter who we’re working with or which tactic we choose, I think the one thing we must always do in the context of rare diseases is to encourage all stakeholders to really, actively listen.

Listen to the fears, listen to the experiences and listen to those things that have really made the difference to that patient. Only then can we give people living with rare diseases the confidence that rare doesn’t mean they don’t matter.