Diseases that are Rare, need much more Care
Commemorating 20-years of Sanofi Genzyme's presence in India
Rare diseases are serious, chronic, debilitating and life-threatening diseases that require long-term and specialized management. Their health expenditure is so high, that it would eventually impoverish the affected patients and their families. The fundamental ‘Right to Health’ rests on the foundation of equal rights and opportunities for all, where no one gets left behind.
Sanofi Genzyme, since its incorporation in India in 2007, has been working in enhancing awareness of rare diseases and capacity building of clinicians.
Sanofi’s India Charitable Access Program (INCAP) is part of Sanofi Genzyme’s global humanitarian program, through which we provide free treatment to patients in India afflicted with Lysosomal Storage Disorders (LSDs) – Gaucher, Pompe, Fabry and MPS Type I. The humanitarian program in India began in 1999, even though Sanofi Genzyme did not have a local presence, then.
With this collection of real patient chronicles who are on our humanitarian program, as well as those supported by government/institutional funding; we have attempted a glimpse into how the lives of people suffering from such debilitating disorders have transformed.
Around 6000 to 8000 rare diseases exist impacting 6-8% of the world’s population.1
In most cases, rare diseases are serious, chronic, debilitating and life threatening illnesses, often requiring long-term and specialized treatments or management.1 These rare diseases disproportionately impact children, often resulting in some form of handicap, which can sometimes be extremely severe.1 Given their rarity, these conditions are difficult to diagnose and treat. Patients end up enduring a long journey involving specialty doctors, tests and misdiagnoses.
Our specialty care business unit, Sanofi Genzyme, focuses on these uncommon and underserved medical conditions. We are committed to empowering the lives of patients with rare diseases by offering sustainable and transformative healthcare options.
In India, even though Sanofi Genzyme set up operations in 2008, we trace our footprints back to 1999 when we provided first enzyme replacement therapy to a Mumbai-based patient, under our India Charitable Access Program (INCAP). Since then, we have worked tirelessly to make a difference in the lives of many such patients suffering from Lysosomal Storage Disorders (LSDs) – Gaucher disease, Pompe disease, Fabry disease and MPS I disease
In support of people with rare diseases:
Free drug program
Serious diseases do not discriminate; they affect people from all walks of life and in all economic circumstances. For patients with rare diseases, we are committed to not only develop effective therapies but also ensure that these therapies reach them, regardless of their ability to pay, through our free drug programs.
India Charitable access program is our free drug program through which we provide free Enzyme Replacement Therapy to patients with any of the four Lysosomal Storage Disorders (LSDs) - Gaucher disease, Pompe disease, Fabry disease and MPS I disease. Since 1999, INCAP has provided support to more than 100 patients in the Country. The program is guided by an expert medical committee that remains closely involved in participating patients' care and progress.
Since 2013, Sanofi Genzyme has been offering free testing for the diagnosis of 5 Lysosomal Storage Disorders (LSDs).
Testing services provided are Enzyme Assay and Mutation Analysis for – Gaucher disease, Fabry disease, Pompe disease, MPS I, and Niemann-Pick B disease
Collaboration to train doctors in medical genetics
Medical genetics is a relatively new field of medicine but in the last few years, it has found relevance into almost all fields of clinical medicine. Although the world has seen significant advances in genetics, there is, however, a severe paucity involved in the practice of clinical genetics in India. This paucity was recognized as an urgent need and hence:
Under this partnership, we offer a joint Clinical Genetics Fellowship Program for a duration of 3 months in 7 reputed Medical Institutions across India:
- All India Institute of Medical Sciences, New Delhi
- Christian Medical College, Vellore
- Sir Ganga Ram Institute of Postgraduate Medicine and Research, New Delhi
- Kasturba Medical College, Manipal University, Manipal
- Nizam’s Institute of Medical Sciences, Hyderabad
- Sanjay Gandhi Post Graduate Institute of Medical Sciences, Lucknow
- SAT Hospital Medical College, Thiruvananthapuram
NATIONAL POLICY FOR TREATMENT OF RARE DISEASES (Accessed April 2018). Available at: https://mohfw.gov.in/sites/default/files/Rare%20Diseases%20Polivy%20FINAL.pdf