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Rare Disease Day 2023


February 27, 2023

At Santé Active Edition – Synergy Pharm, we are therefore particularly keen to express our support to patients and all those involved in the fight against rare diseases on Rare Disease Day.

Rare diseases and the organization of care

What is a rare disease?

Diseases are defined as “rare” when they affect less than one person in 2,000. However, as collectively rare diseases are very numerous (with over 7,000 being identified to date!), more than 300 million people are affected worldwide. Therefore, rare diseases represent a major public health concern.

Which diseases are rare?

What is the difference between rare diseases and orphan diseases?

It is estimated that 97% of rare diseases are also orphan diseases, i.e., diseases for which no curative treatment exists. However, the people affected by these diseases, and their relatives, can still benefit from specific care.

The organization of care for people affected by a rare disease

The rarity and lack of awareness of rare diseases can often lead to diagnostic delays. France was the first country in Europe to develop and implement a National Rare Disease Plan (Plan National Maladies Rares, PNMR) in 2005. This first initiative has since been succeeded by three further PNMRs* to provide a structured framework for diagnosis, treatment and innovation in the field of rare diseases and to ensure better patient care. PNMR4 is currently being developed and all actors are being mobilized to build on the progress made so far and further strengthen their actions for the benefit of patients.

Rare Disease Day 2023: Events and Resources

Since it was first held in 2008, Rare Disease Day has been celebrated every year on the last day of February through the organization of events and awareness-raising activities.

Santé Active Edition – Synergy Pharm projects in the field of rare diseases

Santé Active Edition – Synergy Pharm participates in the fight against rare diseases and for better patient care through medical writing, and thanks to the trust placed in our company by its clients.

*PNMR1: 2005-2008, PNMR2: 2011-2016, PNMR3: 2018-2022