Rare Disease Day 2022
Learn more Rare Disease Day…
Rare Disease Day was created to share information about rare diseases to the public as well as scientific, medical, and governmental decision makers in hopes that these decision makers will support initiatives to meet the needs of people with rare diseases. This worldwide media campaign has events scheduled all over the world that focus on specific diseases in hopes of increasing funding for research. Living with a rare disease, especially without the proper care, can be detrimental to a person’s quality of life. We recognize days like this so those living with the disease get the care and attention they need.
A Spotlight on Cystic Fibrosis?
Cystic Fibrosis (CF) is a genetically inherited disease that results in lung infections and gastrointestinal issues that damage many organs including the pancreas, liver, intestines, and kidneys. CF is typically diagnosed at birth, but it can also be identified while the baby is still in the womb by screening for a gene called the CFTR gene. This disease leads to a thick, sticky mucus building up in the lungs and other organs which can cause infections, inflammations, and eventually lead to respiratory failure.
The life expectancy for those with CF is measured annually, and has exponentially increased to 46-48 years old due to recent aggressive research into new treatments, including Trikafta®. Typical treatment plans include airway clearance techniques, inhaled medications, antibiotic, pancreatic enzyme supplements, CFTR modulators, and nutrition and exercise.
Maxor Specialty Pharmacy Rare Disease Management
Here at Maxor Specialty Pharmacy we specialize in several rare diseases, including CF, and we collaborate with each point in the health system to provide better outcomes. We are also limited distribution providers of several medications, including Trikafta®, Kalydeco®, Orkambi®, Symdeko®, Arikayce®, and Valtoco®. We cater to rare disease patients by working directly with their physicians and providing proactive and personalized care coordination. Maxor even has a best in class adherence rate!