About National mps society
The National MPS Society: Advocating for a Cure
The National MPS Society is a non-profit organization that aims to cure, support, and advocate for individuals and families affected by mucopolysaccharidosis (MPS) and mucolipidosis. With over 40 years of experience in the field, the society has become a leading voice in raising awareness about these rare genetic disorders.
MPS is a group of inherited metabolic disorders that affect the body's ability to break down complex sugars called glycosaminoglycans (GAGs). These GAGs accumulate in cells throughout the body, causing damage to various organs and tissues. There are seven different types of MPS, each with its own set of symptoms and severity levels.
The National MPS Society was founded in 1974 by parents who were searching for answers about their children's diagnosis. Since then, it has grown into an international network of families, researchers, healthcare professionals, and volunteers who are dedicated to finding a cure for these devastating diseases.
One of the society's primary goals is to fund research into new treatments and therapies for MPS. Through partnerships with academic institutions and pharmaceutical companies, they have been able to support groundbreaking research that has led to significant advances in understanding these disorders.
In addition to funding research initiatives, the National MPS Society also provides vital resources and support services for individuals living with MPS. They offer educational materials on diagnosis and treatment options as well as financial assistance programs that help families cover medical expenses associated with managing these conditions.
Another critical aspect of their work involves advocating on behalf of individuals affected by MPS at both the state and federal levels. The society works closely with lawmakers to ensure that policies are put in place that protect patients' rights while also promoting access to quality care.
Overall, the National MPS Society plays an essential role in advancing our understanding of these rare genetic disorders while also providing much-needed support services for those living with MPS. Through their tireless efforts, they are helping to improve the lives of countless individuals and families affected by these devastating diseases.
If you or someone you know is living with MPS, we encourage you to reach out to the National MPS Society for support and resources. Together, we can work towards a future where these disorders are no longer a threat to our loved ones' health and well-being.
mpssociety.org
