Saturday, February 25, 2012

Caring for Rare - A New Dimension of People Power and Empowerment

Notes on the PSOD Psychosocial Support Workshop for Parent Members
Written by Ryan John Pascual*

It has been 26 years since People Power came into history, yet the essence of Filipino People Power remains true to our spirit. A testament to this is the work of the Philippine Society for Orphan Disorders Incorporated (PSOD) and its network of rare disease support groups.

For the past years,  PSOD has continuously served as the primary coordinating body, advocacy network and support group of patients with rare disorders. PSOD aims to increase the public’s awareness on rare or orphan disorders which are long-standing, life threatening, progressive, disabling conditions that require multidisciplinary care. These conditions affect less than one in every 20,000 individuals.

In time with the celebration of the Third National Rare Disease Week, PSOD conducted a Seminar-Workshop on Mutual Psychosocial Support for Parent Members of PSOD last February 25, 2012 at the NIH Conference Room, UP Manila. The activity is part of a series organized by PSOD for Parent Members. The said series includes separate workshops on entrepreneurship, financial management and basic homecare skills.

Psychosocial support, generally, addresses the ongoing psychological and social problems of patients and their families. With this, the workshop aims to facilitate the exchange of experiences and determine the coping mechanisms or “pagdadala” of parents of children with rare disorders. The session was facilitated by Ms. Lyra Versoza, a Chemical Engineering graduate and active Pahinungod volunteer from UP Diliman who pursued her passion with a MA Psychology degree from Ateneo de Manila.  She is a seasoned facilitator of psychosocial support activities in several disasters, as well as in the conduct of trainings, retreats and counseling sessions to students, indigenous people and indigent youth.

Tuesday, February 14, 2012

Primer to the Annual Rare Disease Week Celebration

Frequently Asked Questions (FAQs) on Rare Diseases and the Annual Rare Disease Week Celebration*

Rare but strong together