Rare diseases affect one in 2,000 people individually—but collectively, in Europe, they touch the lives of around 30 million, or roughly one in 17 people. There are over 6,000 known rare diseases, often of genetic origin (72%), and 75% of them affect children. Behind these statistics lie families navigating a complex and uncertain path: delayed diagnoses, scarce—or non-existent—treatments, and profound isolation.

At Azur Health Science, working in this field brings us closer to what truly matters: using our words to help improve the lives of these often-forgotten patients.

Rare Disease
in Numbers

70%: the proportion of rare diseases that have their onset during childhood.(1)
72%: The proportion of rare diseases that have a genetic origin.(1)
Fewer than 500 individuals: the number of people in the EU observed for 85% of rare diseases.(1)
At least 8 healthcare professionals consulted before accurate diagnosis in over 20% of people with a rare disease.(2)
Nearly 5 years: the average time that people with a rare disease wait to get an accurate diagnosis after symptoms first come to medical attention.(2)
Misdiagnosis happens at least once in over 70% of people with a rare disease.(2)
7 in 10: the number of people living with a rare disease and family carers who reduce or stop professional activity due to healthcare management.(3)
Feeling depressed 3 times higher in people with a rare disease than the general population.(3)
More than 2 hours per day: the time spent on tasks related to rare disease in 2 out of 3 family carers.(3)
Collective goals: to reduce the diagnostic journey to less than 1 year, to support the development of 1000 new therapies for rare disease by 2027, and to develop methods to assess the impact of diagnosis and therapies on people with rare disease.(4)

(1) Faye et al. Time to diagnosis and determinants of diagnositic delays of people living with a rare disease: results of a Rare Barometer retrospective patient survey. Eur J Hum Genet. 2024;32(9):1116-26.

(2) Nguengang Wakap et al. Estimating cumulative point prevalence of rare diseases: analysis of the Orphanet database. Eur J Hum Genet. 2020;28:165-73.

(3) Juggling care and daily life: the balancing act of the rare disease community.

(4) source: https://irdirc.org/resources-2/rd-metrics/

At the heart of Azur Health Science…

Our Commitment to Rare Disease

At the heart of Azur Health Science…

Our Commitment to Rare Disease

A Clear Vision for a Complex Field

We have chosen to focus our expertise on rare disease because the need is immense—and still largely unmet. For too long, these patients have been overlooked. Today, they need strong voices to represent their reality within a competitive and highly regulated environment.

Every document we write is a piece of the puzzle: advancing research, informing agencies, persuading authorities, and offering families the hope that one day, a treatment may become reality.

The Critical Role of Medical Writing

At Azur, our craft goes far beyond scientific writing. We transform complex data into messages that are clear, compelling, and accurate. We contribute at every stage of clinical trials and regulatory submissions. Our mission? To ensure that every word plays its part in bringing innovation to patients.

Without precise communication, no therapeutic breakthrough can move forward. When done right, medical writing becomes a powerful driver of change.

A Committed Team, Strong Values

Azur Health Science was born of a personal and professional commitment: to put our experience to work for a cause we deeply care about. From two people at the beginning, we’ve grown into a team of experts, united by core values: excellence, integrity, innovation, and mutual respect.

We believe in human, long-term collaboration—both within our team and with our customers. Because behind every project, lives are at stake, and we never forget that our work has real-world impact.

Any questions ?

Feel free to reach out for further information

The Azur Health team is here to support you and respond to your needs with professionalism and responsiveness.

  • info@azurhealthscience.com
  • 03 67 26 79 51

A Committed Team, Strong Values

Azur Health Science was born of a personal and professional commitment: to put our experience to work for a cause we deeply care about. From two people at the beginning, we’ve grown into a team of experts, united by core values: excellence, integrity, innovation, and mutual respect.

We believe in human, long-term collaboration—both within our team and with our customers. Because behind every project lives are at stake, and we never forget that our work has real-world impact.

Any Questions ?

Feel free to reach out for further information

The Azur Health team is here to support you and respond to your needs with professionalism and responsiveness.

  • info@azurhealthscience.com
  • 03 67 26 79 51