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Attending the WHO high-level meeting to defeat meningitis - Elena Moya, Europe coordinator

We recently caught up with Elena Moya, our regional coordinator for Europe, who attended the World Health Organization (WHO) high-level meeting to defeat meningitis in April 2024. Here are her thoughts on how it went and why it was such an important event.

Tell us about your role as a regional coordinator and a bit about your organisation.

I was appointed regional coordinator for Europe in 2015. My role is to serve as a link between CoMO's head office and each of the 24 CoMO members in Europe. I organise meetings every three months so we can give updates on our daily work and activities and provide support. I share resources and materials with them, created, for instance, for World Meningitis Day.

My organisation, Asociación Española contra la Meningitis (AEM), has been a full CoMO member since 2008. Since then, AEM has grown meteorically! Today AEM has over 200 members and is the only patient voice organisation that raises awareness of meningitis and represents affected families across Spain. Our services include a free 24-hour helpline, a fundraising gala dinner that raises €20,000 for families with low-income status and free psychological therapies by a voluntary team of health care professionals.

What was your experience on the day of attending the WHO event and of meeting so many influential people?

Very impressed. Very proud to be invited and share this historical moment. The WHO Road Map has always been supported by the Meningitis Research Foundation and CoMO but this event showed me how important the patient voice is to WHO. The event agenda devoted the same importance and time to the experts as to the patients and families. It was heartwarming to hear CoMO members Alicia Stillman (Emily Stillman Foundation) and Siobhan Carroll (ACT for Meningitis), and our Chief Executive of CoMO and Meningitis Research Foundation, Vinny Smith, speak on the day. I was thrilled to be there and listen to their personal stories and calls to action. Now the dream can come true: we will globally defeat this horrendous disease all together!

Why was the WHO high-level meeting important?

The WHO Road Map was launched in 2020 but planning started back in 2017, so this meeting was the first time really that we could discuss and share what was agreed at the Wellcome Trust in 2018. It represents an important milestone in defeating meningitis because the principal stakeholders were present. We all agreed that the time is now to push for action to meet the goals of the Road Map.

How did the voices of people affected by meningitis influence the day?

Personal stories are always powerful. Some health experts and politicians haven't really been in touch with people affected by meningitis, nor with the disease itself. It was a great opportunity to listen to sad stories, to parents that transformed their pain into action, that decided to launch associations and foundations all over the world to raise awareness about the disease and its symptoms, to advocate for prevention, to support the families. The testimonials of the British and Italian survivors (Mike Davies and Andrea Lanfri) were impressive; and CoMO was well represented by proud members from the US, France, Nigeria, Ireland, the UK and Spain.

Left to right: CoMO members Elena Moya, Alicia Stillman, Siobhan Carroll and Jane Plumb.

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