Rare disease is a battle that one in 20 people will fight in their lifetime, and most rare diseases do not have a cure. EURORDIS and its Council of National Alliances have established the last day of February as Rare Disease Day to bring awareness to the rare disease community and shed light on progress health organizations are making towards the development of medications and therapeutics:
Progress in Partnerships
Cure Rare Disease is partnering with the University of Massachusetts Medical School to gather additional knowledge about neutralizing antibodies and their impact on AAV virus therapeutic treatment for rare disease. Antibodies help fight off foreign pathogens, and they are found in varying levels in the body. Complications for the rare disease therapeutic treatment arise when the body has significant levels of the antibodies that fight the AAV virus.
Diving into Drug Development
Your Community Cares Rx membership cards grants you access to a plethora of medications at a competitive price. Research professionals are diligently working to grant rare disease patients easy access to treatment medications. In September 2019, the FDA initiated numerous efforts to assist with drug development research, including a data analytics platform for secure sharing of patient-level data and a clinical outcome assessment program.
The National Organization for Rare Disorders (NORD) established the RareAction Network, aimed at improving the lives of the 30 million Americans diagnosed with rare diseases. This organization provides a network for members to connect with people, utilize educational resources, stay up to date on industry news and communicate with various opinion leaders. Members of this organization initiate meaningful action and depend on the strength of their community.
For more details on Community Cares Rx and other programs that provide costs saving on prescription medications, please visit http://www.paramountrx.com/.