Organizzazione in primo piano: Associazione per l'acidemia organica

CHANGEMAKERS

Mar 22

Dichiarazione di missione

Siamo un'organizzazione senza scopo di lucro la cui missione è quella di fornire alle famiglie e agli operatori sanitari la conoscenza dei disturbi metabolici dell'acidemia organica. Sosteniamo l'intervento precoce attraverso uno screening neonatale esteso, sollecitiamo contributi e distribuiamo fondi che sostengono la ricerca per migliorare il trattamento ed eventuali cure nelle aree dei disordini dell'acidemia organica.

Registro dei pazienti OAA

The Organic Acidemia Association has launched the largest-ever study of rare organic acid disorders to advance research, improve treatment, and discover a cure. The OAA Patient Registry consists of electronic surveys that collect information about the patient's experience and disease progression. Patients, or their caregivers or guardians, can enter information from anywhere in the world. The data are anonymous and stored securely in an online portal called a registry.

To learn more about registries for patients with organic acid disorders, visit: https://www.oaanews.org/oaa-patient-registry.htm.

Nutrizione e ricette

OAA ha un'ampia sezione di articoli e risorse sulle linee guida dietetiche e nutrizionali:

https://www.oaanews.org/nutrition--recipies.html.

Check out a new Metabolic Balancer app to replace the DietWell App and to help people living with Metabolic disorders feel balanced. It will make individuals feel better with key functionality to create recipes, track phe and protein intake, share information with friends, learn about Cambrooke products, and much more. In addition to all the features and user interface enhancements, with this new release, we have rearranged recipes, meal ingredients, food items, and their classification, to make the new app more relevant, efficient, and organized.

Screening neonatale

Access newborn screening websites and videos, oral testimony, articles by Kathy Stagni, and the National Coordinating Center for the Genetics and Newborn Screening Regional Collaborative Groups: https://www.oaanews.org/newborn-screening.html.