Gemma McCarthy, Director of Strategy and Planning, shares her insights on connectivity and the rare patient experience

Everyone who works in healthcare communications will have lost count of the number of times they have been asked “why do you work in the industry?” It’s a hard question to answer without sounding trite or naïve – we all want to make a difference to people’s lives, but when you consider the context of the healthcare environment, effecting positive change isn’t always easy.

This situation becomes increasingly hard when you look at rare diseases. If no two patient situations or experiences are the same in a chronic and widespread disease like asthma or diabetes, how can we ever draw parallels to improve the patient experience if there are only a handful of people suffering with the disease in any one country?

It’s all about collaboration with families and communities

Tackling the situation in rare disease requires a rare mindset and an unparalleled ability to dig deep into patient experience. Many people suffering from a rare disease may never even meet someone with the same condition as them, or in the case of Cystic Fibrosis (CF) they are actively discouraged from meeting face to face in order to prevent cross-infection of bacterial infections.

There is often a real unmet need to connect communities and families to share experiences and support, especially where patient associations may be underfunded or only operate at a country level rather than regionally, which is often true in the EMEA region.

Tackling the situation in rare disease requires a rare mindset and an unparalleled ability to dig deep into patient experience.

Build real partnerships with industry

Connecting patients with medical interventions starts from the moment we engage and really start to listen to their experiences. Understanding the roadblocks along their journey to diagnosis and access to treatment reveal that market access, commercial activities and medical education are vitally interconnected.

The industry teams that bring orphan or advanced medicinal therapeutic products to market are some of the most dedicated I have worked with, often working in small groups under intense scrutiny to commercially develop customer-centric solutions and services. It takes a true partnership approach on all fronts to build a successful and harmonized customer experience that runs the length of the patient pathway, from diagnosis to therapy and ultimately, reintegration.

The future in rare disease is more promising today than it has ever been before – but that doesn’t mean our work is done

In 2020 we celebrate the rare community and all they have achieved: Rare is Strong, Rare is Proud. I am lucky enough to be part of a truly connected and collaborative team who are committed to continue to make more brighter tomorrow’s possible for the 1 in 17 people who experience rare disease.