In the Press
Chiesi Global Rare Diseases Announces Collaboration with the National Alliance on Mental Illness to Offer Mental Health Resources for Fabry Disease
4 ِApril 2023
- Rare and potentially life-threatening lysosomal storage disorder leads to wide range of symptoms that may affect quality of life.
BOSTON, April 4, 2023 - Chiesi Global Rare Diseases, a business unit of the Chiesi Group established to deliver innovative therapies and solutions for people affected by rare diseases, today announced a collaboration with the National Alliance on Mental Illness (NAMI), the nation’s largest grassroots mental health organization, to offer new mental health resources to people living with Fabry disease.
“Fabry disease can be seriously debilitating, and its complications strongly impair patients’ quality of life and daily activities,” said Giacomo Chiesi, head of Chiesi Global Rare Diseases. “We often find that mental health challenges are associated with many rare and chronic diseases like Fabry disease. We are grateful for the opportunity to partner with NAMI, an organization that shares our commitment to deliver solutions that can help these underserved communities.”
Fabry disease is a rare, progressive, potentially life-threatening lysosomal storage disorder that leads to the progressive accumulation of abnormal deposits of a fatty substance in blood vessel walls throughout a person’s body. It is a multisystemic organ disease and patients experience a wide range of signs and symptoms including episodes of pain, impaired peripheral sensation, and eventually end-organ failure of the kidneys, heart, and the cerebrovascular system. Fabry disease occurs in one in 40,000 to 60,000 people.
“At NAMI, we are dedicated to improving the lives of individuals and families affected by mental illness,” said NAMI Chief Development Officer Jessica Edwards. “There tends to be a stigma surrounding mental health, and that can be especially difficult to manage for people who are living with a rare disease. We hope that people who are impacted by Fabry disease find strength in these new mental health resources.”
As part of the collaboration, Chiesi Global Rare Diseases and NAMI are launching a new website, Mindfully Rare, specifically designed to support the mental health of people with Fabry disease and their caregivers. The website includes information about the symptoms of mental illness, coping strategies, real life stories from people living with Fabry disease, and resources for caregivers.
About the National Alliance on Mental Illness
The National Alliance on Mental Illness is the nation’s largest grassroots mental health organization dedicated to improving the lives of individuals and families affected by mental illness. Join the conversation at nami.org | facebook.com/nami | instagram.com/namicommunicate | twitter.com/namicommunicate #Together4MH
About Chiesi Global Rare Diseases
Chiesi Global Rare Diseases is a business unit of the Chiesi Group established to deliver innovative therapies and solutions for people affected by rare diseases. As a family business, Chiesi Group strives to create a world where it is common to have a therapy for all diseases and acts as a force for good, for society and the planet. The goal of the Global Rare Diseases unit is to ensure equal access so as many people as possible can experience their most fulfilling life. The unit collaborates with the rare disease community around the globe to bring voice to underserved people in the health care system. For more information visit www.chiesirarediseases.com.
About Chiesi Group
Chiesi is an international, research-focused biopharmaceuticals group that develops and markets innovative therapeutic solutions in respiratory health, rare diseases, and specialty care. The company’s mission is to improve people’s quality of life and act responsibly towards both the community and the environment.
By changing its legal status to a Benefit Corporation in Italy, the US, and France, Chiesi’s commitment to create shared value for society as a whole is legally binding and central to company-wide decision-making. As a certified B Corp since 2019, we’re part of a global community of businesses that meet high standards of social and environmental impact. The company aims at becoming net-zero by 2035.
With over 85 years of experience, Chiesi is headquartered in Parma (Italy), operates in 30 countries, and counts more than 6,000 employees. The Group’s research and development centre in Parma works alongside 6 other important R&D hubs in France, the US, Canada, China, the UK, and Sweden.
For further information please visit www.chiesi.com.
Berry & Company Public Relations