Rare Disease Encounter
28 February 2019 - 03 March 2019
Hosted by Federación de Enfermedades Poco Frecuentes Chile (FENPOF)
FENPOF Chile (Federación de Enfermedades Poco Frecuentes Chile), emerged at the beginning of the year 2019 with the purpose of working with groups, associations, foundations, and organizations in a collaborative way to address policies, nationals and state-based, in order to change and improve the reality of more than 1,300,000 Chileans affected by rare diseases. We are confident that through collaborative networks we will be able to institutionalize these diseases and incorporate them into Chilean health legislation. Thus, FENPOF Chile called different organizations to participate in activities to commemorate the international rare disease day.
EVENT 1: on February 28th at 7:30 p.m, #Fenpof will carry out an #Iluminaton (play of light) in the memory of children, youth and adults with rare diseases who have passed away. We want to show with this act that none of them will ever be forgotten, along with the need for a Rare Disease Law.
EVENT 2: on March 3rd; 10:00 a.m - 1 p.m, #Fenpof has summoned more than 20 organizations to participate in "Informative Stands" that look for #Educate, #Inform, #Visualize and #Sensitize civil society about rare diseases, the difficulty of diagnosis and the high cost of treatments. This activity will carry out at the #Ciclorecreovia in Andrés Bello (Plaza de la aviación/Metro Salvador, Providencia), a point of Santiago that is very popular with families that participate in sports activities.