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Patient organisation focus: European LAM Federation

Patient organisation focus: European LAM Federation

Iris Bassi is the Founder of European LAM Federation. We talked to her about the aims and mission of the organisation, and about a dedicated lymphangioleiomyomatosis (LAM) symposium taking place at the ERS Congress this year.

Can you tell us about European LAM Federation?

The idea of founding a European organisation first came about in 2009 and became a concrete project in 2010 after the European LAM conference. Although the USA was ahead of the game and had a strong network, this was the first time patient organisations working in LAM had come together in Europe. There was a real need to collaborate on a bigger scale and work towards a common goal. When you are advocating for a rare disease, it is much harder to raise awareness than when you are advocating for a condition that affects many people and is a name that people recognise. It was therefore even more important that we joined together and combined our efforts.

How did you become involved in the organisation?

As President of LAM Italia, I was familiar with the field and the situation with LAM patient groups in Europe. While working closely with the European Organisation for Rare Diseases (EURODIS), I had the idea to start a European network for LAM patient and advocacy groups. It was time to give LAM more visibility. As a patient with LAM, I feel the same as other women with the condition; we cannot wait. We must keep fighting to reach the people in power to affect change in our lifetime. It is this belief that drives me in my work and it is why I set up the European LAM Federation.

What are your big milestones this year?

Our aims over the next few years are to create a LAM registry in Europe. There are currently some existing in a few European countries, but we need an official registry across the continent in order to reach all patients. By reaching out to all patients we can share our knowledge of LAM and the drugs that are available so that all patients are aware of how they can manage their condition. This will also allow us the opportunity to bring more patients together to advocate with one voice. This registry is a long way off and we will need to receive funding to make this milestone a reality.

Can you tell us about the LAM event at the ERS Congress?

This year, we will hold two events at the ERS Congress focused on patients’ priorities for LAM research. The first event is a dedicated workshop to gather the opinions of people with LAM. We have also launched an online survey for people who cannot attend to gather their opinions to feed into the workshop. The results of the workshop will then be collated and fed into a special symposium entitled: ‘Advances in care for patients with lymphangioleiomyomatosis (LAM)’, and will be disseminated as a report after the event.

We hope that this will be a prime opportunity for patients to join together with healthcare professionals and representatives from the pharmaceutical industry to work towards our goal of improving the lives of people living with LAM.

What are the key challenges you face over the next year?

Funding and new research are the two main challenges we face. As LAM is a rare condition, a major barrier is raising awareness and increasing our supporters. We must raise the profile of the condition if we are to increase our funding and encourage more research in LAM.

What are you most proud of in your organisation?

I am proud of all the women active in LAM who also live with the condition. We all wake up every day and think “we don’t want to give up”. This belief is needed to instigate change. We all love our lives and we won’t give up yet. This is a positive message for patients and it is the ethos that our organisation works under. I am proud of this attitude and proud of our organisation.

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