Organic Acidemia Association Corporation
Organic Acidemia Association Corporation
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About this organization
Mission
Provide support and information to professionals and parents dealing with a set of inborn errors of metabolism called organic acidemia.
About
Attended the Abbott Nutrition Metabolic Conference on March 23-25, 2017 in South Carolina. Attended the Nord IAMRARE Conference in October, 2017 hosted by Nord (National Organization for Rare Disorders).
Interesting data from their 2019 990 filing
To provide information and support to parents and professionals dealing with a set of inborn errors of metabolism diseases known as organic acidemia.
- Revenue reported was $116,269.
- Expenses reported were $106,352.
- Other expenses reported $79,920.
- The non-profit reported a excess or deficit for $9,917.
- Contributions, gifts, and grants reported were $116,266.
- The non-profit filed a copy of the returns in ["MN", "NV"].
Accomplishments
- Hosted our bi-annual family conference with over 300 in attendance in the twin cities, mn.attended/exhibited at two professional conferences, society for inherited metabolic disorders (simd) on march 11-14 2018 in california and genertic metabolic dieticians international (gmdi) on april 26-28, 2018 in florida.attended nord (national organization of rare disorders) patient registry meeting in washington dc. Expenses $0.
- Publishes a newsletter two times a year to provide information to parents and health professionals on updates, editorials and letters from and for affected families. monitors private/public facebook group with other social media presence on twitter and instagram. Expenses $0.
- Collaborated with rare science, inc. to send "rare bears" to 82 oaa children.collaborated with moderna theapeutics on patient reported outcome survey for new treatments for mma/pa.conducted a webinar on insurance reimbursement guidance. Expenses $0.