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ECRD and the road to equity: In conversation with patient advocate Rebecca Skarberg

junio 2022

Ahead of the 11th European Conference on Rare Diseases and Orphan Products on 27 June – 1 July, we asked Rebecca Skarberg, patient advocate and EURORDIS Volunteers Award recipient, to shed light on the unseen struggles that people living with rare diseases face in their daily lives. She shared with us her thoughts on how systemic barriers can be removed to ensure inclusion and participation for all and gave us her reason to attend the conference shaping future rare disease policies.

Invisibility as a barrier to equity

“When your condition is rare and prevalence is low, this leads to all sorts of misunderstandings, misinformation, and not being able to access help that, in fact, is out there.” 

The scarcity of knowledge, the lack of research, and a lifetime of explaining to your peers about your condition are just some of the roadblocks that people living with a rare disease have to tackle on a daily basis. What adds to this feeling of isolation is the reality that there is a “lesser chance of meeting someone living with the same condition”.

The exclusivity of rare diseases often leads to consequences that extend beyond the medical aspect. From the lack of inclusion in school and work environments to the lack of understanding among family members and friendship groups, Rebecca points out that it is when the “rarity itself becomes a greater burden” that it significantly takes a toll on an individual’s mental and social well-being. Additional factors such as gender, or being part of a racial or ethnic minority can often worsen this level of discrimination.

Breaking through structural barriers

“We need to create equal access to public places. To schools, businesses, everywhere”.

Reducing inequalities, as Rebecca points out, is one of the most important areas we need to improve on moving forward, to ensure that people of all ages living with a rare disease are given the same opportunities as others. Appropriate provisions and systemic change must be applied to shape equitable cultural and social values, so that rare diseases are no longer considered a disadvantage. The question is, how?

In practice, equity means “meeting people’s specific needs and eliminating barriers preventing their full practice in society” [1] . Rare Disease equity furthermore signifies non-discrimination in work, school, and leisure.

Yet, increasing the level of accessibility to public places, ensuring equity in educational and professional systems, and tackling the general lack of awareness have proven no easy task to achieve due to the lack of visibility in ill-adapted systems.

ECRD – towards making equity a European priority

“I think that the best thing about ECRD is bringing in all the professionals, and bringing forth concrete examples of what actually does work”. 

The ECRD recognises that a rare disease is much more than just a health issue. Indeed, as the EURORDIS #30millionreasons campaign has shown – during which over 2100 people across Europe shared their reasons for European action on rare diseases – the impact of living with a rare disease goes far beyond the medical aspect.

As one of the conference’s three main visionary goals, ‘Reduced Inequalities’ focuses on how we can make achieving equity for all a European priority. Tracks C and D of ‘Reduced Inequalities’ utilise real-world evidence and data to measure the burden of people living with rare diseases in society in order to inform policy decisions. Likewise, case studies sharing good practices of inclusivity in schools and workplaces are discussed to explore how holistic care can be integrated at a European level.

By bringing to the table concrete examples and specific projects such as the Rare2030 Recommendations, the ECRD examines how structural barriers can be broken down to construct better care pathways for the rare disease community.
More importantly, it seeks to bring to the forefront of this pivotal discussion the reality of the 30 million people living with a rare disease throughout Europe — whose challenges should no longer be left unseen, and whose voices should no longer be left unanswered. Register now!

For any questions regarding ECRD 2022, contact Martina Bergna, EURORDIS Events Manager:

 [1] EURORDIS – Rare Diseases Europe: What Is Equity For People Living With A Rare Disease? 2022 

By Rose Wei, EURORDIS Digital Communications Intern