Understanding Organic Acidemia Advocacy: The Monaco Family Story
Jana Monaco, an Advocacy Liaison for the Organic Acidemia Association, shares her family's journey with organic acid disorders. The Monaco family's experience highlights the importance of patient advocacy groups, patient engagement, and overcoming barriers in research studies. Through personal benefits, collaboration efforts, and patient support, they aim to empower others facing similar challenges and drive advancements in treatment and care.
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Jana A. Monaco Advocacy Liason, Organic Acidemia Association www.oaanews.org Jana.monaco@verizon.net
The Diagnosis Diagnostic Odyssey Acute Episode
Organic Acidemia Association We are a volunteer non-profit organization whose mission is to empower families and health care professionals with knowledge in organic acidemia metabolic disorders. We support early intervention through expanded newborn screening, solicit contributions and distribute funding that supports research toward improved treatment and eventual cures in the areas of Organic Acid disorders.
Personal Benefits Life saving Have a common bond Learn from one another Trust Understanding Connection to larger organizations like NORD Path to advocacy
Patient Advocacy Groups Patient engagement Patients come to them for emotional support diagnosis is scary Knowledge Day to day support : multiple layers, ie education, finance, guardianship, Improve disease management Link to research and latest news on disease or disorder access to care, policy issues, and medical advances. Trust Access to medical supplies, medication Access to medical experts-medical board of directors
Discussion Points Collaboration Ease of recruitment and retention EMR data collection-families assume this is happening patients want the end result-new drug development Can t assume costs for new drugs
Patient Barriers for Research Studies Lack of awareness of studies-some clinicians don t bring them to their attention Study not proven beneficial to patient Physical barriers inaccessibility; can t travel,etc. No local studies
