Projects and Research

Selfie Studio I

Selfie Studio I – Analysis of medical units and national member organizations (NMOs) for the care of people with hemophilia and other coagulation deficiencies in Latin America.

Objective:
Know how is the management of patients with hemophilia and other coagulation deficiencies in the region and thus determine what elements are available to provide comprehensive treatment.

Participants: 15 NMOs from America

Bolivia, Brazil, Canada, Chile, Colombia, Dominican Republic, Ecuador, El Salvador, Guatemala, Mexico, Nicaragua, Panama, Paraguay, United States, Venezuela.

Poll
In total, 75 questions were asked, divided into the following topics:
ONJ Personality
ONM relationship with medical body
National patient registry
Right to health in each country
national health laws
Medicines, availability, acquisition, consumption
Institutional processes of care
Management schemes
treatment centers

Organizing Group
Members of ONM, from Brazil, Colombia, the United States, Mexico and Venezuela participated.
With a group of medical experts from each participating country
During 3 years there were more than 4 face-to-face meetings for the structuring of the interview
A general coordinator was appointed to carry out the surveys (Mexico)
It was decided to hire a University to carry out the analysis of the answers, with the University.

See results

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