The new UN Resolution & equity for People living with a rare disease (PLWRD)

Interview with Lea Jebali, intern at Rare Diseases International (RDI)

Who are you and what is your relationship to OI?Lea Jebali with food

My name is Léa, I am 22 years old and I have OI. As a child and teenager, my family and I went to many OI events at the regional association in Germany. When I moved to the Netherlands for my studies, I got to know the Dutch OI association, which was a great experience. I find it very enriching to build an international network of people living with OI. It’s a great way to meet people from different countries and help each other.

Tell us about what you do!

I am studying Global Project and Change Management, a program that prepares me to become a project manager to tackle global challenges. Besides studying, I love cooking plant-based foods and inviting my friends over. I also enjoy reading books by Elif Shafak or Kübra Gümüsay. And holidays, but who doesn’t like holidays at the beach?

Right now I’m an intern at Rare Diseases International (RDI), which is part of my studies. Ingunn Westerheim sent me the internship posting from RDI online and encouraged me to apply. RDI was interested in my profile and they found it valuable that someone would do research for them. This is how I am currently writing my bachelor’s thesis at RDI. The purpose of my internship is to produce valuable research for RDI to build upon and continue their advocacy efforts. I started the internship in February 2022 and will finish in June 2022.

What are you doing there?

Lea with a glass of wine

I study the commonalities and the differences between living with a rare disease and living with a disability. Therefore, I examine the challenges that people with a disability and persons living with a rare disease face and the impact this has on a person’s life. After analyzing the literature, I have begun to interview experts and patient experts in the field of disabilities and rare diseases. Through a survey, I would like to have rare disease experts prioritize and rate the overlapping and distinguishing elements. I will summarize my findings in a research report and an advisory report for RDI.

What are the three most important things we should know about the UN Resolution?

The Resolution “Addressing the Challenges of Persons Living with a Rare Disease and Their Families” is the first United Nations Resolution to address the specific challenges of persons living with a rare disease. Recognition is a first step in raising awareness and working toward change. I think this is something to be excited about and proud of as a rare disease community.

This achievement is the result of all the hard advocacy and political work of civil society, activists, and NGOs who have pushed for the recognition of the challenges faced by persons with rare diseases! Cheers to them!

The resolution is just the beginning, it now needs to be implemented by different countries and networks. It is up to them to develop their strategies and national work plans, etc. to improve the quality of life of persons living with a rare disease. And it is up to us to advocate for it.

OIFE had a campaign with the keyword EQUITY. How do you define equity for people with RD?

For me, equity is not only an endpoint but also a means. People living with a rare disease (PLWRD) must be involved in decision-making to be fully represented and to develop solutions that truly serve PLWRD and their families. In addition, human rights must be respected. PLWRD should have the opportunity to receive a diagnosis and appropriate treatment. In addition, education, decent work, and a life free of poverty and hunger should be guaranteed. To ensure this, the appropriate resources to improve the quality of life must be provided.

Graphic showing sustainable development goals

How is the resolution connected to the CRPD or the UN development goals?

The UN 2030 Agenda with its 17 Sustainable Goals (SDG) calls for justice and equity in various areas. Discrimination starts early for children living with a rare disease, for many of them access to Quality Education (SDG 4) is denied or impeded. Families with a member living with a rare disease are at greater risk of impoverishment (SDG 1 No poverty) due to higher expenses to care and fewer earnings because one parent often has to reduce working hours or stop working to provide care.

Women are disproportionately discriminated against and excluded from society (SDG 5 Gender Equality) either as patients themselves, in family planning or as the main caregiver of PLWRD and her family. SDG 8 Decent work is impeded for PLWRD as they experience difficulties in the process of independent living to finding, keeping, or returning to work after hospitalization.

The UN resolution, therefore, refers not only to the Conventions on the Rights of Persons with Disabilities (CRPD), but also to the Universal Declaration of Human Rights, the Convention on the Rights of the Child, the International Covenant on Economic, Social and Cultural Rights, and the Convention on the Elimination of All Forms of Discrimination against Women.

What kind of effect do you hope the resolution will have?

Lea in her wheelchair outside

I hope that the resolution will open the eyes of policymakers, politicians, and those in power. Health is a human right and should be accessible to everyone, including persons living with a rare disease. The rarity of the disease should not be a criterion for discrimination and a lower quality of life. Even though we still have a long way to go, I am sure that a better and more equitable world is possible!

What are your dreams for a job/career?

I don’t know what the future holds. What I do know is that I want to pursue a career that has a positive impact on the world and our society. Although there have been improvements in women’s rights, disability rights, and PLWRD quality of life over the past few decades, we still have a long way to go before we achieve full equity for all people. I would love to work in an organization that addresses systemic injustice and strives for intersectional justice.

In your opinion, what should OIFE focus on in advocacy work?

Well, I’m not an expert on advocacy. But I think inclusion and diversity are very important for advocacy. People with OI face different challenges depending on where they live, when they received their diagnosis, what impairments they have, and socioeconomic differences, among many other things. These differences must be embraced and considered when advocating for people with OI. OIFE’s responsibility is to listen to these different experiences, to include people of all genders and backgrounds, and to be open to diversity and a wide range of knowledge and experience. Only by being inclusive can we reach a diverse network of people.

Any messages for the readers of the OIFE magazine?

Follow your heart! Be kind!

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