Growing Grassroots Support for the Rare Disease Community in Romania

In 2007, Dorica Dan, the mother of a child with the rare disease Prader Willi Syndrome, envisioned the first and only patient-run reference center for rare diseases in Europe. It would help patients and families with the decisions and therapies that are needed after receiving their diagnosis. Organized as a collaborative team of partners committed to building a straightforward pathway forward for patients, Dan worked tirelessly to provide the space by raising funds to design a unique one-stop resource called NoRo. As a result of establishing this new hub, approximately 10 percent of diagnosed patients with a rare disease in Romania are able to receive holistic and cross-sector services. The center has also established the only registry for rare disease patients in Romania.

NoRo is the first-of-its-kind pilot reference center for rare diseases in Romania. The main purpose is to provide integrated health and social services for people and families affected by rare disease. NoRo is groundbreaking in its approach as it integrates many types of therapies including art, music, behavioral and medical. NoRo prides itself on covering the whole spectrum of resources, leading many who have felt confused and unseen by the medical community and society, to feel like they are finally recognized and validated.

The center also offers information and training services for small groups of patients diagnosed with the same rare disease. One immersive five-day program offers therapy, education, and rehabilitation targeted to small groups. “The program was diverse and intense; we were challenged and found out more about ourselves and about others,” notes Ana Maria, a young woman who went through the NoRo program to help her navigate life with her rare disease, Thalassemia.

Since its inception, NoRo and its programs have gained a very positive reputation in Romania and beyond. In fact, the center has enjoyed recognition on the world stage, including the 2021 World Economic Forum, where NoRo was presented as an example of how the Romanian government built a holistic, interdisciplinary service center based on a grassroots, patient-led effort.

“We are united by our challenges and the desire to live and enjoy life every day. We all confront issues with sleeping, eating, walking, speaking, breathing and behavior but in being together, as friends, at the NoRo Center we find faith and hope!”

-Dorica Dan

Recognizing Rare Disease

This year, Rare Disease Day is February 28. The day was first organized in 2008 by EURORDIS-Rare Diseases Europe, a nonprofit alliance representing 984 rare disease patient organizations in 74 countries. The idea is to “work towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease.”

Illumina recognizes Rare Disease Day and extends it to the entire month of February in order to highlight and support various organizations. This year we are focusing on NoRo in Romania, SLC6A1 Connect in the US, ASrid in Japan, and Rare Diseases South Africa. Illumina’s patient advocacy team sent Polaroid cameras and asked these four organizations to capture a day in the life of a rare disease family. We received hundreds of photos and anecdotes from families on four continents, some of which you see here. We hope that the images will convey both the good and the difficult.

“Rare Disease Day is a special day for the rare community,” says Adriana, a family patient of NoRo. “I believe that on this day the community is more open to our needs and I feel better that our children are not marginalized and that there are people that are willing to fight for our rights.”