April brings with it the warmth of Spring, and nature’s metabolic rejuvenation and regrowth. Ironically, it also ushers in International Fabry Disease Awareness Month. Fabry is a rare inherited disorder of metabolism in which the body does not produce enough of an enzyme called alpha-galactosidase A, or alpha-GAL. You may not have heard of this rare, inherited disease. At Connexion Healthcare, we specialize in communicating the science behind rare diseases and raising awareness.
Throughout the world, patients, young and old, are affected with symptoms of Fabry disease, including severe pain, eye and skin problems, kidney dysfunction, and an increased risk of cardiac complications, which is the most common cause of death in these individuals.
Over the last several decades, renal dialysis and kidney transplants have increased the lifespan of patients with Fabry disease. Even so, early diagnosis is crucial so that patients can initiate enzyme replacement therapy and thereby reduce the risks of severe kidney complications, interrelated cardiovascular complications, and other clinical manifestations.
In the United States, the National Fabry Disease Foundation is again spearheading the crusade to encourage the Governor of each state to sign a proclamation declaring April Fabry Disease Awareness Month. States are also organizing their own events, such as Walk for Awareness.Join with us at Connexion to support the Fabry disease community and urge your Governor to declare April Fabry Disease Awareness Month.
About the Connexion Healthcare Rare Disease Center of Excellence
Connexion Healthcare is a full-service global provider of strategic medical and scientific communications with decades of experience providing exceptional service to the pharmaceutical industry. We provide services through 2 Centers of Excellence—Oncology and Rare Disease—and possess core expertise in these therapeutic areas and their marketplaces.
The Connexion Healthcare Rare Disease Center of Excellence specializes in communicating the science behind rare diseases and orphan drugs. We strategically partner with industry leaders in the rare disease community to proactively connect all stakeholders in launching products to underserved patient populations. Our team comprises skilled communications experts who plan, develop, and disseminate scientific communications based on their advanced knowledge of the science, the patient journey, healthcare providers, and the orphan drug approval process.
At Connexion, our cross-functional teams navigate complicated treatment and market landscapes by elucidating the appropriate pathways to brand success. We understand how brand strategy drives market share. Since launching its dedicated Rare Disease Center of Excellence, Connexion has developed prelaunch, launch, and postlaunch communications in numerous rare diseases and disorders: congenital and genetic, movement, metabolic, and lysosomal storage disorders; lung, blood, skin, and endocrine diseases; and rare cancers.
For further information regarding the Rare Disease Center of Excellence at Connexion Healthcare and how we can develop rare disease communications to differentiate therapies by their unique attributes, contact:
Susan Stein, MPH
SVP, Strategic Services and Business Development