News

Project Rare Launched

The Philippine Society for Orphan Disorders, Inc. (PSOD) launched its Project Rare Program at a dinner affair last Feb. 25, 2009 at the Brasserie 21 Restaurant at the Security Bank, Ayala Ave., Makati City.

Project Rare kicked off the public awareness campaign to support the critical care of children born and afflicted with rare diseases.

The series of activities to create public awareness aims to (1) increase the registry of patients and refer them to the Institute of Human Genetics of the National Institute of Health for accurate diagnosis and access to available treatment, (2) build a network of partners and friends who can share their time, talent, and/or resources to contribute to the collective efforts to sustain a better quality of life for our member patients, and, (3) with the support of various sectors of society, build an endowment fund to sustain the life long medical treatment and therapies of patient members.

Dra. Carmencita Padilla, Chairman of PSOD, welcomed the guests comprised of current and potential donors, partners, friends, members of the medical society from Australia, Singapore and Taiwan, the patients and their families.

Mrs. Cynthia Magdaraog, President of PSOD outlined the specifics of the awareness campaign and the strategies to increase awareness, build network of partners and friends, and the start up of the Endowment Fund.

Dra. Margarita Jimenez , Medical Director for Asia Pacific of Genzyme Corporation, spoke of the various lysosomal disorders, their causes and possible treatment for patients with rare diseases under this group of disorders.

Engr. Elpidio Paras, PSOD Vice President and grandfather of Carlos Benedict Uy—a patient member afflicted with MSUD—shared with the audience their extremely personal experience that saved the life of Carlos, thru the timely and accurate diagnosis of Dra. Padilla. Carlos at birth was just given a few hours to live. Engr Paras gave a very heart warming closing remarks for the affair.

Gracing the occasion as Guest of Honor and Keynote Speaker was Dr. Jaime Galvez Tan, former Secretary of Health who spoke of possible ways where PSOD can approach government for assistance. Dr. Galvez Tan ended his speech with “I will be your Champion (endorser)”.