The second Africa Rare Disease Summit is held in Tunisia from May 24-25, 2024.
At Sanofi’s initiative, some 150 scientific experts and practitioners from 6 countries (Algeria, Egypt, Libya, Morocco, Tunisia and South Africa) came together to share their experience in diagnosing, managing and treating the main rare disease pathologies.
Over 7,000 rare diseases currently affect more than 350 million people worldwide. In Tunisia, an estimated 600,000 people suffer from rare diseases.
A disease is said to be ‘rare’ when it affects less than one person out of every 2,000. They are all severe, chronic and progressive.
The resulting medical wandering accentuates the risk of the disease worsening and can worsen patients’ quality of life. The rarity and complexity of these diseases can complicate diagnosis and treatment. They are extremely diverse: neuromuscular, metabolic, infectious, immune, and cancerous.
During the works of the summit, several scientists were able to share their experiences of diagnosing patients suffering from these pathologies, and it was not easy for many of them, who had to undergo tests and consult colleagues to put a name to these diseases.
In a statement to the media, Aneflous Bouchra Managing Director of Sanofi Specialty Care, Morocco-Tunisia-Libya voiced pride “of the progress of the concrete actions that have been implemented, in particular the launch of the ‘Sanofi Metabolic Academy’ for the ongoing training of healthcare professionals, as well as the necessary preparations for the setting up of the national register of rare diseases, which will enable these pathologies and therapeutic approaches to be better evaluated.”
Aneflous Bouchra Managing Director of Sanofi Specialty Care
“For over 40 years, Sanofi has been deeply committed to being at the forefront of science and innovation, bringing together its people and resources worldwide to help improve the daily lives of people affected by and living with rare diseases., She added.
Aneflous said that Sanofi has developed different therapies for the treatment of many rare diseases. Its first area of focus was Gaucher disease, over the past two decades, Sanofi has expanded its focus to include Fabry disease, Pompe disease, Mucopolysaccharidosis I and Niemann Pick disease.
“We have mobilised our people and resources to help those affected, as well as their families and healthcare providers, who may face difficulties in obtaining accurate diagnoses and managing their care. Despite our decades of existence and the many milestones we have achieved, we know that there are still unmet needs, including equity in diagnosis, innovation, access to treatment and support for patients and their families”, Aneflous pointed out.
“Even when a treatment proves tolerable and effective, Sanofi continues to seek therapies that will improve the standard of care. This means building on its scientific understanding and striving to develop more therapies with the potential to improve patients’ lives”, Aneflous Bochra concluded.
Sanofi is an innovative global healthcare company driven by one vocation: to pursue the miracles of science to improve people’s lives. Teams in more than 100 countries are transforming the practice of medicine to make the impossible possible. Sanofi provides therapeutic solutions that can change patients’ lives and vaccines that protect millions of people worldwide, guided by the ambition of sustainable development and social responsibility.
TunisianMonitorOnline (NejiMed)
