Rare diseases do not discriminate; they affect people from all walks of life and in all economic circumstances. Sanofi’s responsibility to the patient community extends beyond the research and development of effective therapies to include providing support to patients, who often have nowhere else to go–no matter who they are or where they live.
Sanofi Genzyme has two Humanitarian Programs, which provide support to patients with five different lysosomal storage disorders (LSDs), a group of rare genetic conditions caused by enzyme deficiencies, as well as patients with hemophilia, a rare genetic disorder in which a person’s blood does not clot normally.
Throughout this month, we’ll be sharing stories of patients around the world who receive this support and who inspire Sanofi’s employees around the world.
Sanofi Genzyme’s vision is to help transform the way hemophilia care is delivered in the developing world, where the vast majority of people with hemophilia have limited or no access to diagnosis and treatment.
That’s why, together with Sobi, an international rare disease company, we are continuing to deliver on the 2014 pledge to donate up to one billion international units (IUs) of clotting factor—to replace missing blood clotting factor-over 10 years, with up to 500 million IUs to the World Federation of Hemophilia (WFH) Humanitarian Aid Program over a period up to five years.
In just four years since shipments began in 2015, we have touched the lives of more than 16,500 people in 40 developing countries, treated almost 117,000 acute bleeds, and enabled over 1,800 surgeries through the WFH.
Hemophilia is a rare, genetic condition in which a person’s blood does not clot normally because of insufficient levels of certain clotting factors–proteins that control bleeding. People with hemophilia may bleed spontaneously or for a prolonged period of time after an injury (e.g. from falling, impact, injury to the head). Bleeding can occur inside the body, most often into the joints. Repeated bleeding in the joints can cause other health problems such as joint damage.
These donations have been life changing for patients and their families. Here are two of their stories: