Autoimmune Pulmonary Alveolar Proteinosis (aPAP) is a rare lung disorder affecting approximately seven people per million. The disease affects individuals of all races, geographic regions, gender, and socioeconomic status. It has been diagnosed in individuals from 3 to 90 years of age.
To share community perspectives on this rare disease, the National Organization for Rare Disorders (NORD) is proud to partner with the PAP Foundation to organize and host a virtual, externally led Patient-Focused Drug Development (EL-PFDD) meeting. An EL-PFDD is an innovative event that provides an opportunity for families and patients to share critical information about the impact of a rare disease on their daily lives and provide valuable insight for researchers, medical product developers and health care providers. It is one of the most important ways the voices of rare disease patients and caregivers can be heard and utilized in decision making.
The stories of patients and caregivers affected by aPAP are powerful, and their perspectives are critical to the decisions made by drug developers. This is an extraordinary opportunity to listen to medical and patient discussion and storytelling, as well to participate in live, online polling and Q&A. Anyone affected by aPAP, as well as researchers, clinicians and other supporters are invited to attend.
One in 10 Americans lives with rare disease, many of whom fight a daily battle to access the care and support they need. Your gift to the National Organization for Rare Disorders (NORD®) funds life-changing programs and helps us advance policies and research to ensure that everyone gets the care they need AND deserve.
