The Continuous Push for Equity in the Rare Disease Community
While the phrase “rare disease” drives the point that these conditions are uncommon, together they affect more than 300 million people worldwide1. Collectively, the rare disease community is sizable, strong, and bravely navigating the unique and complex realities of any one of 7,000 known rare diseases1. Yet, all too often, this community is under-heard and under-supported. We are committed to raising the voices of the rare disease community as part of our ongoing efforts to improve people’s lives.
At Sanofi, pursuing equity for people living with a rare disease continues to be a top priority, and to truly drive innovation in treatment and support, we must deeply understand the diverse experiences that shape their lives. This year, we have the opportunity to share experiences from individuals within our own Sanofi walls who are living or caring for someone with a rare disease, which not only deepened our understanding of rare disease realities, but also highlighted the importance of having perspectives from such extraordinary people as part of the Sanofi community.
Rare Disease Day, the last day of February, is not just a date on the calendar – it’s a time to put forth real stories of resilience and double-down on our commitment to continuously push for representation, inclusion, and awareness of this remarkable community.
Elevating Equity from Within
To call for equity within the rare disease community at large, all of us at Sanofi need to embrace that equity from within. Our colleagues who are directly affected by a rare disease have a profound impact on the entire Sanofi family, and we are immensely grateful to bring to life the true colors of their personal stories.
Sharing Truths and Showing True Colors
*All participants are Sanofi employees who are living with or caring for someone with a rare disease.
Manny is living with hemophilia B and through his rare disease journey has discovered his own "superpower" of empathy.
I want people outside the rare disease world to know that rare diseases can’t always be seen. [Our] experiences shape us into the people we are today.
Manny
Living with haemophilia B, United States
Manny, like so many in the rare disease community, have a profound understanding of a shared experience, and a powerful drive to connect with others.
Mirjana has a child living with alternating hemiplegia, a rare neurological disorder with no known treatment option. Like Manny, she agrees that the rare experience impacts every facet of daily life. Always being ready to address the complexities that a rare disease presents has been vital to her approach in caring for her daughter.
We must always have a wheelchair on hand in case she can no longer walk, or if she's completely paralyzed by an episode.
Mirjana
Daughter lives with alternating hemiplegia, France
Staying vigilant and ready for anything is echoed by our colleague Sarah, who has two children diagnosed with alpha-1 antitrypsin deficiency (AATD). AATD affects both lung and liver function.
We had to be mindful of everything my children were breathing in. Whether it be they’re at the gas station, or bleaches that they're cleaning with, as well as anything processed by the liver.
Sarah
Children live with alpha-1 antitrypsin deficiency (AATD), United States
Community support has proven invaluable for Sarah’s family. Through research, she connected with organizations dedicated to AATD, where she found information, guidance, and a network of others facing similar challenges. "We were in touch with parents that were dealing with the same thing, who were caregivers to their children as well.” She emphasizes the importance of giving back, too, adding “having a strong voice” to uplift this community can help expand access to support for others who need it worldwide.
A Continuous Push
For over 40 years, Sanofi has been deeply rooted within the rare disease community, working tirelessly to identify and address unmet needs.
We, along with Manny, Mirjana, and Sarah, are fueled by the hope of making a difference. “Every disease deserves attention and support for the well-being of those affected,” says Mirjana, “I remain hopeful that one day a cure will be found for our children.” For Manny, his experiences drive forward his professional work in community relations and education, calling it “an absolute privilege and honor” to serve the community he is a part of. “I want to motivate another person living with a rare disease to strive for more, to live life to the fullest,” he explains.
Working at Sanofi is deeply personal for Mirjana as well. “Working in rare disease allows me to gain a deeper understanding of the scientific developments surrounding these conditions,” she explains. Progress is also a powerful source of strength for Sarah and her children. “We’ve come a long way with research [in AATD],” she reflects with pride in the team that continues to bring visibility and support to this community. Together, these Sanofi voices highlight the importance of advocacy, scientific research, and the collective strength of those who are devoted to driving change.
As we continue to champion innovative research and advancements across lysosomal storage disorders and beyond, Sanofi remains dedicated to elevating awareness, fostering holistic support, and ensuring inclusivity.
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Rare Diseases
References
- Haendel M, Vasilevsky N, Unni D, et al. (2020) How many rare diseases are there? Nat Rev Drug Discov 19:77-78. doi: 10.1038/d41573-019-00180-y