This initiative comes from Margarita Vasquez, from FAETH (Fundacion de Apoyo a Enfermos con Transtornos Hipofisiario), an Ecuadorian foundation and WAPO member, that supports patients with pituitary disease. In this initiative, the rare disease community in this country, which is estimated to be around 1,000,000 people, directed a simple message to government assembly members.
Assembly persons were given a flower with a note that read:
Si un voto hace la diferencia, un millón establece una brecha. Somos un millón de Ecuatorianos que padecemos alguna Enfermedad Rara, ¿ Que estás dispuesto hacer por mi?
“If one vote counts, one million will make a difference. We are a million Ecuadorians who suffer from a rare disease. What are you willing to do for me?
FAETH represents patients rights and advocates for medical treatment and medications and is a WAPO (World Alliance of Pituitary Organizations) member. This type of public policy work is critical to encourage political leaders to enact policies and practices that support patients communities with rare conditions, a segment often ignored around the world.
For those of you who speak Spanish, you can go to the FAETH social media page for more information on this initiative, or check the upcoming WAPO newsletter.
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