Skip to content
Generic filters
Exact matches only
Search in title
Search in content
Search in excerpt

“We were on a mission!”: Advocates reflect on their time at Brussels Rare Disease Week

February 2023

On 6-9 February 2023, 38 rare disease advocates from across Europe convened in Brussels for Rare Disease Week.

During the week, participants engaged in training and practical efforts to influence policymaking on behalf of the tens of millions of people living with rare diseases across the continent.

After everyone returned to home to their respective countries across, we spoke to two attendees of Rare Disease Week: Lyndsey Walsh, Advocacy Officer at Rare Ireland Family Support Network, and Oriana de Sousa, a rare cancer advocate from Portugal.

Both Lyndsey and Oriana found that attending Rare Disease Week empowered their efforts to advocate for their communities going. They described coming away from the week with a strong sense of being part of a larger, united European community of advocates.

They also shared how the week provided with a deeper understanding about how their personal and their community’s experiences can be drawn upon to effect positive change and start meaningful discussions with those who decide on policy, both at the EU and national level.

Meet: Lyndsey Walsh, Ireland

What is your background in rare disease advocacy and what led to you attending Brussels Rare Disease Week?

I am the advocacy officer for Rare Ireland Family Support Network and our primary focus is to support families affected by rare disease.

In the last year we have decided to also get involved in advocating for the rare disease community and highlighting the challenges our community faces.

We are actively involved in several advocacy campaigns and we are working with other rare disease organisations to do this.

Attending Brussels Rare Disease Week was an opportunity to highlight these challenges at a European level and propose strategies in which the EU could actively help to bring about meaningful change for the rare community. It was an opportunity to learn so much within a short space of time and meet other rare disease advocates from across Europe.

What were your favourite moments from Rare Disease Week?

My favourite moments from Brussels Rare Disease Week included meeting the rest of the group and EURORDIS staff members on the first morning.

Everyone was so welcoming and it didn’t take long for us all to feel at ease with each other.

Meeting three MEPs from Ireland was such a highlight and I really came away from those meetings feeling much more confident and empowered to have similar meetings back home in Ireland if the opportunity arises.

The conference ‘For a patient-driven evolution of the Orphan Medicinal Product Regulation’ was another highlight, especially to hear from those with lived experience of rare disease and what it means for them.

How do you believe attending Brussels Rare Disease Week will have empowered your efforts to advocate for your community in future?

Without a doubt, Brussels Rare Disease Week has greatly improved my confidence and empowered me to pursue advocacy efforts on a national level in Ireland.

It’s taught me the power of bringing the lived experience to the table but also bringing potential solutions with political support. Working together and bringing a united message is key to any future advocacy opportunities.

Meet: Oriana de Sousa, Portugal

What is your background in rare disease advocacy and what led to you attending Brussels Rare Disease Week?
I attended representing those with a rare form of cancer, especially in young populations. I am a rare cancer survivor myself, and I have been advocating for the rare cancer community both individually and in collaboration with non-governmental organisations (NGOs).

I decided to attend Brussels Rare Disease Week as I feel it is imperative to join forces and call for change with fellow people from the rare disease community.

Additionally, I felt that the week provided an opportunity to remain committed to the cause and shape the future we foreseen in the Rare 2030 Project, in which I was one of the Project’s Young Citizens.

What were your favourite moments from Rare Disease Week?

The whole week was the kind of experience you do not live twice!

There were many unique activities that we got to participate in.

The role-play in the Parlamentarium, during which we were required to debate policy as though we were Members of European Parliament of different political groupings, was a particularly funny and vivid memory.

The meetings with MEPs were the moments where I felt we were on a mission, and putting our soul into the effort of making an impact, all the while controlling our nerves.

Above all, my favourite moments were the opportunities of us all coming together, and the strong feeling of connection and of having a community!

How do you believe attending Brussels Rare Disease Week will have empowered your efforts to advocate for your community in future?

Following Brussels Rare Disease Week, I hope to bring more visibility to the community of rare cancer patients.

I hope that the recommendations of Rare Cancers 2030 are no longer simply written on paper, and that they become a reality. We cannot invest in oncology all the while kicking rare cancer patients to the curb. We need to give rare cancer patients access to innovative treatments! This is urgently needed to save more lives and give rare cancer patients a real opportunity to be treated in the EU.

What did Lyndsey, Oriana and our advocates get up to at Brussels Rare Disease Week?

Discussing policy asks with Members of the European Parliament

Advocates directly discussed their policy needs with 30 MEPs from across the European Parliament’s political groupings, relaying their five policy asks of: 1) advancing the development of orphan medicines; 2) improving disability assessments; 3) acting on mental health needs; 4) optimising the European Health Data Space (EHDS); and 5) launching a European Action Plan for Rare Diseases.

Our advocates not only valued the opportunity to engage in lengthy, meaningful discussions with these MEPs about their experiences and policy calls – even more crucially, they valued the opportunity to build on these newly established relationships and maintain dialogue going forward.

Pushing for improved access and development of rare disease medicines

At the conference in the European Parliament on Wednesday 8 February, titled ‘For a patient-driven evolution of the Orphan Medicinal Product Regulation: Addressing unmet needs’, patient advocates and EU policymakers discussed the necessary evolution of the regulatory framework, built to drive innovation and improve access to transformative rare disease treatments.

The conference, hosted by Frédérique Ries MEP and EURORDIS, shed light on the expectations of the rare disease community ahead of the Revision, which will amend the legislation first introduced by the EU in 2000. The Revision aims to incentivise industrial investment in the development of medicines for rare conditions. During the conference, our Chief Executive Officer Yann Le Cam restated EURORDIS’ proposed recommendations for the upcoming Revision of the Orphan Medicinal Products (OMP) Regulation.

Meeting the Spanish Permanent Representation to the EU

Advocates heard from Enrique Terol, Health Attaché to the Spanish Permanent Representation, who elaborated on his hopes and plans for coming Spanish Presidency of the EU Council.

Mr Terol detailed and took advocates’ questions on the policy advances that he plans for the coming Spanish President to effect across a wide range of areas, from the European Health Data Space to rare disease patients’ mental health, to bolstering the European Reference Networks, to upgrading the model for incentivising the development of rare disease medicines.

Placing themselves in policymakers’ shoes

On the first day of Rare Disease Week, participants enjoyed engaging in an exercise at the Parlamentarium, which enabled them play the role of MEPs from the European Parliament’s different political groupings.

The exercise provided an opportunity for advocates to learn more about the deliberative and decision-making processes of the European Parliament.

Strengthening the community

Ultimately, many of our advocates felt that the most valuable aspect of Rare Disease Week was the opportunity to build connections and strengthen community bonds with each other.

Although the challenges and experiences of individuals living with rare diseases are unique and may differ, many challenges and experiences are often transverse borders and disease areas. Uniting the rare disease community in Europe can lead to collective success in their pursuit of a better world for those affected by a rare condition.

Julien Poulain, Communications Manager