Pictured: Akash, Gaucher disease, with his family in India
Sanofi’s Rare Humanitarian Program is the first initiative of its kind for people with lysosomal storage disorders (LSDs) – a group of rare genetic conditions caused by enzyme deficiencies. We launched the program when our first treatment for Gaucher disease was approved by the U.S. FDA in 1991.
The program provides access to free treatments for patients who meet the program’s criteria and otherwise would not have access to such treatments. We have since expanded support to five additional LSD communities, which includes Fabry disease, Pompe disease, acid sphingomyelinase deficiency (ASMD), and mucopolysaccharidoses (MPS) types I and II.
You can read about the impact of our rare disease humanitarian program, and the lessons learned from three decades of collaboration with local authorities and non-governmental organizations, in the Orphanet Journal of Rare Diseases.1
3,500+
People in 100+ countries have received access to free therapy since the program began
1,000+
People in 70+ countries are currently receiving access to free therapy
375+
People have received access to free therapy for over 10 years
150+
New people receive access to free therapy each year
* Internal Sanofi data
Stories of hope
Since 1991, we’ve helped improve the health and lives of thousands of people with rare diseases around the world. Each of them has a unique story to share.*
* Each patient story reflects the real-life experiences of individuals diagnosed with a specific disease. Individual patients may experience these conditions differently.
For healthcare providers
To submit a request for a person living with one of the above listed lysosomal storage disorders, please access the Rare Humanitarian Patient Online Referral Tool (PORT).
Hemophilia Humanitarian Aid
More than 75% of people with hemophilia have limited or no access to diagnosis and treatment. Many people with severe hemophilia in the developing world often do not survive to adulthood, or face a life of disability, isolation, and chronic pain. Sanofi believes all patients should have access to care regardless of where they live.
Sanofi, together with Sobi, is continuing to deliver on their 2014 pledge to donate up to 1 billion IUs of factor therapy over a ten-year period to the World Federation of Hemophilia (WFH) Humanitarian Aid Program. This is the single largest donation of hemophilia factor therapy in history.
Since donations began in 2015, the commitment has had a far-reaching impact. Over 588 million IUs of donated factor therapy have been used to treat over 18,800 people in 41 countries. This has resulted in*:
588m
IUs of clotting factor donated through 2021**
18,800+
People treated
41
Countries
994
Children under age 10 receiving prophylaxis treatment
229k+
Acute bleeds treated
3,300+
Surgeries performed
* All data as of 2015-2021 provided by World Federation of Hemophilia
** International Units
Blood Brothers: Behind the Lens
As a Founding Visionary Contributor to the WFH Humanitarian Aid Program, Sanofi is committed to helping to provide a predictable and sustainable supply of treatment to people with hemophilia living in emerging countries.
Partnerships for Humanitarian Aid
The local expertise and relationships of our partners is essential to making humanitarian aid work for patients. We’re grateful to those who help us identify and reach patients around the world.
Some of the partners we work with on humanitarian efforts include:
World Federation of Hemophilia Humanitarian Aid Program
Project HOPE
American Near East Refugee Aid
Direct Relief
Global Health Partners
China Charity Federation
Related stories
20 Years of Humanitarian Support in China: Zhengtao’s Story
27 Years of Humanitarian Programs in Vietnam
Sanofi’s Rare Humanitarian Program Recognized as “Transformative”
Transforming Humanitarian Aid in Hemophilia
Providing Hope to the Hemophilia Community in Kenya
Reference
- Verma, I.C., et al. Transformative effect of a Humanitarian Program for individuals affected by rare diseases: building support systems and creating local expertise. Orphanet J Rare Dis 17, 87 (2022). https://doi.org/10.1186/s13023-022-02192-1.
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