CRANBURY, N.J.--(BUSINESS WIRE)--Rare Disease Report® (RDR®), a digital component of Rare Disease Communications®, adds the Lowe Syndrome Association (LSA) to the Strategic Alliance Partnership program, announced Michael J. Hennessy Jr., president of MJH Associates, Inc., parent company of Rare Disease Report®.
“We are honored to partner with one of topmost organizations committed to the cause of Lowe syndrome (LS),” said Michael J. Hennessy Jr. “We look forward to supporting the LS community by offering education to enhance treatment and disorder management.”
Founded in 1983, after a concerned mother’s determination brought together families dealing with this rare genetic condition, the LSA became one of the only foundations dedicated to LS. The syndrome affects children, mostly boys, and causes varying levels of physical and mental handicaps and medical problems. By fostering communication, providing education and supporting research, the organization is committed to helping those affected by this disorder. The LSA’s unstoppable efforts have led to accurate diagnoses for children, more effective treatment options, a better-informed health care community and better support systems for caregivers and loved ones. What started out with just 15 families, currently includes 225 families in 37 states and 26 countries. In addition, the LSA is a member of National Organization for Rare Disorders.
LSA president Lisa Waldbaum added, "The LSA gives people help and hope as they face a grim diagnosis for their sons. We connect them with other families for support and with medical professionals for advice. We provide information on the best ways to help their sons attain their highest potential. And our strong support for research makes life better today and is leading to a cure. Our next International Conference on Lowe Syndrome is being held in San Diego, CA June 28-30, 2019. Details at lowesyndrome.org. "
The collaboration with the LSA will help provide exceptional content including the latest innovations in clinical research and advocacy news to help medical professionals better serve their patients. Additionally, the content will help keep patients well informed about developments in the rare disease community.
For more information about the SAP program, please visit http://www.raredr.com/sap-partner.
About Rare Disease Communications®
Rare Disease Communications® is a health care communications and media company focused on the rare disease community and dedicated to raising awareness of rare diseases and orphan drugs so that patients will be diagnosed and treated more efficiently. Rare Disease Communications® is part of the MJH Associates, Inc., family of businesses, based in Cranbury, New Jersey. MJH Associates is dedicated to improving quality of life through health care education, research and communication. To learn more, visit http://www.mjhassoc.com.
