ADRi THD: The State of the Rare Disease Law

The Stratbase ADR Institute, in partnership with the Philippine Society of Orphan Disorders (PSOD) and UHCWatch, hosted an event on rare diseases entitled “The State of the Rare Disease Law: Continuing Implementation and the Delivery of Responsive Health Services to the Affected Population”.

This event continued previous discussions regarding the institutionalization of government’s support in preparation for the budget call for 2023, identify access points and current services, and discuss possible expansion of rare diseases list, as aligned with the Rare Disease Act. This is the follow-up event to a virtual town hall discussion organized by the Institute and its partners back in January, entitled “No One Should be Left Behind Amid the Continuing Pandemic – Facilitating the Implementation of the Rare Disease Law for 2022”.

It is important to continue the discourse on rare diseases, especially in light of how health concerns are still a key issue after more than two years of this pandemic. Rare diseases (RDs) only affect a small percentage of the country’s population (about 1 in every 20,000 Filipinos), yet it is immensely debilitating and life threatening to those who have it. Despite the initial allocation of Php104.9 million specifically intended for the implementation of Rare Diseases Act in the General Appropriations Act (GAA) of 2022, there continues to be challenges that need to be addressed to improve the situations of RD patients.


PROGRAM

Welcoming Remarks
Prof. Victor Andres Manhit
President, Stratbase ADR Institute

Continuing the Rare Diseases Discussion and the Path Towards Achieving its Overall Vision of Rare Diseases Act
Dr. Carmencita D. Padilla
Chancellor, University of the Philippines – Manila
Founding Chairman, Philippine Society of Orphan Diseases

Updates on the 5-Year Rare Disease Management Department Circular and
the RD Technical Working Group

Dr. Razel Nikka M. Hao
Director, Disease Prevention and Control Bureau,
Department of Health

Setting up the Rare Disease Registry and the Process of Choosing Priority
Rare Diseases

Dr. Eva Maria C. Cutiongco-dela Paz
Executive Director, National Institutes of Health

Pharma Industry Support to Innovative Therapies for Rare Diseases

Ms. Daisy Cembrano
Director for Healthcare Policy,
Pharmaceutical and Healthcare Association of the Philippines

Psychological, Social, and Economic Burdens of Rare Diseases

Durhane Wong-Rieger, Ph.D
Representative, Asia Pacific Alliance of Rare Disease Organizations;
President & CEO, Canadian Organization for Rare Disorder
s

Rare Disease Act’s Continuous Support from Legislators

Hon. Juan Edgardo “Sonny” M. Angara
Senator and Chair of the Committee on Finance,
Senate of the Philippines

REACTORS

Mr. Christopher S. Muñoz
Vice President,
Philippine Alliance of Patient Organizations

Dr. Lizette Kristine F. Lopez
Chair, Subcommittee on Drugs,
Health Technology Assessment Council

Ms. Cynthia Magdaraog
President
Philippine Society for Orphan Disorders

Moderator
Mr. Alvin M. Manalansan
Healthcare and Education Convenor, CitizenWatch Philippines;
Co-Convenor, UHCWatch

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