Meeting of minds

INSPIRE, a global collective of five like-minded rare neuroimmune patient advocacy groups (PAGs) discuss the key issues in rare neuroimmune conditions and call for collective action.

When we reflect on illnesses that could interfere with a long and healthy life, we think of leading global causes of death – cancer, heart disease and diabetes.

But there’s a another, bigger threat in this story. One of the biggest challenges of our time: neurological, or brain disorders, the leading cause of disability worldwide.

In fact, the total cost of neurological diseases in Europe is comparable to cancer, heart disease and diabetes combined.

Globally, action on brain health is insufficient, resulting in a lack of data, limited policy response and inadequate services. And unlike cancer, heart disease and diabetes, most neurological disorders don’t make headlines.

Stroke, multiple sclerosis and Alzheimer’s disease are more common neurological disorders that receive media attention, funding for research, and have more established treatment options and support networks.

But you’ve probably never heard of most rare immune neurological conditions, like myasthenia gravis, neuromyelitis optica spectrum disorder, Myelin oligodendrocyte glycoprotein antibody disorder, Guillain-Barré syndrome or autoimmune encephalitis.

Yet we need to start paying attention to rare immune neurological conditions, because while each overlooked condition affects a smaller population, together they account for significant disability and disease burden.

Addressing the challenges for people with rare neuroimmune disorders would have a profound impact on supporting healthier communities for tomorrow.

So, what are the specific challenges for rare neuroimmune communities?

Patients with rare diseases are often initially misdiagnosed and experience delays in diagnosis. This causes significant financial burden, increasing disability as treatment is delayed, strains on relationships and long-term emotional distress, all of which can lead to additional health problems.

The rare neuroimmune community, however, has unique challenges that compound these issues. Presenting symptoms can be diverse, fluctuating and at times non-specific, for example, fatigue and weakness. There is also a general lack of neurologists to diagnose and treat.

There are no known causes or cures for these rare neuroimmune disorders. This is an active research space, meaning there are no established treatment plans or up-to-date information for patients. They require specialised long-term care, resulting in a high and often overlooked burden for caregivers and loved ones.

Our global collective, INSPIRE, is ready to address the common challenges shared by these rare neuroimmune disorders.

We recognise a strong need to create a community of knowledge and expertise, a place where everyone directly and indirectly impacted by a rare neuroimmune disorder can learn from the experiences of others.

Collective action, via information exchange, is the beginning of our vision coming to life!

We are working on building a much-needed connection, or repository, to share the latest research developments, tools and treatment options.

We will build on this collective voice and power, involving as many people as possible to bring the community together.

By sharing our experiences and exchanging information openly and transparently, we identify areas on which to collaborate. This is how we are opening the door to change!
We know this is an ambitious goal to achieve in an ever-changing landscape. We believe it starts here. We believe it starts with us.

We believe that together, we can use our collective voice to effect change for millions of people living with a rare neuroimmune disorder.

That’s why we’ve come together as INSPIRE – the Immune Neurological Spotlight: Patients Insights and Rare Disease Exchange.

We are a collective of motivated patient advocacy group representatives from five rare neuroimmune communities looking to inspire collective action. We participate in information and insights exchange to ensure the rare neuroimmune communities are well supported.

Together, we want to highlight the challenges in rare neuroimmune disorders – conditions that share one thing in common: they involve the complex interplay of both our neurological and our immune systems.

Placing differences aside, we have identified commonalities in our patient communities.

There are several unique barriers that impact all rare neuroimmune disorders and we truly believe that together we can break these down

Together, we have collectively identified the need to improve the following aspects:

• Patient education – creating plain language resources that benefit people living with rare neuroimmune conditions and their loved ones in multiple languages
• Healthcare professional education – providing them with the knowledge to support early diagnosis, long-term monitoring and effective communication with patients
• Community connection – connecting patients to support them in navigating resources and seeking emotional support, as well as connecting healthcare professionals to facilitate knowledge sharing
• Clinical studies information sharing – supporting awareness of available clinical studies alongside plain language resources to enhance understanding.

The landscape of rare neuroimmune diseases is constantly changing, and we must get creative in how we can help. We know that ideas come from collaboration with, and learning from, other patient groups and patient representatives. We can inspire each other.

Contributors: S. Ahmed, M. Antonellis, F. Baggi, J. Behne, M.K. Behne, M. Devlin, E. Frostell-Pyhäjärvi, M. Fuchs, W. Huff, J. Lefelar, E. Lilli, S. Masterson, S. Mazari, M. Neville, M. Poe, T. Sammut and D. Zaftis