“Fly and Sail with Rare”
A “worry-free day” advocacy event was held here Feb. 27, 2016 for 31 children, afflicted with rare or orphan disorders, and their guardians to experience what it feels like to sail in a Navy vessel and fly in a Navy aircraft.
“Fly and Sail with Rare” aims to give an extraordinary experience for kids with rare disorder through a whole day of outdoor fun activities.
Thirty-one children from Philippine Society for Orphan Disorders, Inc. (PSODI) and their parents/guardians are the beneficiaries of this advocacy campaign. PSODI is a non-profit organization whose aim is to continue the efforts of doctors to ensure sustainability of medical and financial support of patients with rare disorders.
These children are trying to live a normal life despite frequent hospital visits for their medication and treatment.
Research shows that 30% of children with rare disease die before the age of five.
Patient and Family Welfare Program Coordinator of PSOD, Ms. Janet Paguirigan said, “…It is about the experience of these children because you’ll never know until when they are going to stay here because of their condition specially those who do not have access yet to medicines they need.”
In his welcome remarks, Cmdr. Ariel Halasan, deputy commander of the Naval Air Group (NAG), assured the participants that they will strive their best to provide the extra ordinary experience of fun fairs and joyride with their Navy assets. “But more than the experiences, we offer you our friendship and our admiration for living the ideals that our organization is advancing: your courage for living up with the challenges, your strength for not succumbing to it, your faith for believing in your dreams and aspirations; and your hope for dreaming big and aspiring for greater achievements,” Halasan added.
The activity wwas in conjunction with the nation’s observance of the 7th National Rare Disease Week, which joined hands with the rest of the world in celebrating the 9th World Rare Disease Day.
“Fly and Sail with Rare” aims to give an extraordinary experience for kids with rare disorder through a whole day of outdoor fun activities.
Thirty-one children from Philippine Society for Orphan Disorders, Inc. (PSODI) and their parents/guardians are the beneficiaries of this advocacy campaign. PSODI is a non-profit organization whose aim is to continue the efforts of doctors to ensure sustainability of medical and financial support of patients with rare disorders.
These children are trying to live a normal life despite frequent hospital visits for their medication and treatment.
Research shows that 30% of children with rare disease die before the age of five.
Patient and Family Welfare Program Coordinator of PSOD, Ms. Janet Paguirigan said, “…It is about the experience of these children because you’ll never know until when they are going to stay here because of their condition specially those who do not have access yet to medicines they need.”
In his welcome remarks, Cmdr. Ariel Halasan, deputy commander of the Naval Air Group (NAG), assured the participants that they will strive their best to provide the extra ordinary experience of fun fairs and joyride with their Navy assets. “But more than the experiences, we offer you our friendship and our admiration for living the ideals that our organization is advancing: your courage for living up with the challenges, your strength for not succumbing to it, your faith for believing in your dreams and aspirations; and your hope for dreaming big and aspiring for greater achievements,” Halasan added.
The activity wwas in conjunction with the nation’s observance of the 7th National Rare Disease Week, which joined hands with the rest of the world in celebrating the 9th World Rare Disease Day.
A “worry-free day” advocacy event was held here Feb. 27, 2016 for 31 children, afflicted with rare or orphan disorders, and their guardians to experience what it feels like to sail in a Navy vessel and fly in a Navy aircraft.
“Fly and Sail with Rare” aims to give an extraordinary experience for kids with rare disorder through a whole day of outdoor fun activities.
Thirty-one children from Philippine Society for Orphan Disorders, Inc. (PSODI) and their parents/guardians are the beneficiaries of this advocacy campaign. PSODI is a non-profit organization whose aim is to continue the efforts of doctors to ensure sustainability of medical and financial support of patients with rare disorders.
These children are trying to live a normal life despite frequent hospital visits for their medication and treatment.
Research shows that 30% of children with rare disease die before the age of five.
Patient and Family Welfare Program Coordinator of PSOD, Ms. Janet Paguirigan said, “…It is about the experience of these children because you’ll never know until when they are going to stay here because of their condition specially those who do not have access yet to medicines they need.”
In his welcome remarks, Cmdr. Ariel Halasan, deputy commander of the Naval Air Group (NAG), assured the participants that they will strive their best to provide the extra ordinary experience of fun fairs and joyride with their Navy assets. “But more than the experiences, we offer you our friendship and our admiration for living the ideals that our organization is advancing: your courage for living up with the challenges, your strength for not succumbing to it, your faith for believing in your dreams and aspirations; and your hope for dreaming big and aspiring for greater achievements,” Halasan added.
The activity wwas in conjunction with the nation’s observance of the 7th National Rare Disease Week, which joined hands with the rest of the world in celebrating the 9th World Rare Disease Day.
A “worry-free day” advocacy event was held here Feb. 27, 2016 for 31 children, afflicted with rare or orphan disorders, and their guardians to experience what it feels like to sail in a Navy vessel and fly in a Navy aircraft.
“Fly and Sail with Rare” aims to give an extraordinary experience for kids with rare disorder through a whole day of outdoor fun activities.
Thirty-one children from Philippine Society for Orphan Disorders, Inc. (PSODI) and their parents/guardians are the beneficiaries of this advocacy campaign. PSODI is a non-profit organization whose aim is to continue the efforts of doctors to ensure sustainability of medical and financial support of patients with rare disorders.
These children are trying to live a normal life despite frequent hospital visits for their medication and treatment.
Research shows that 30% of children with rare disease die before the age of five.
Patient and Family Welfare Program Coordinator of PSOD, Ms. Janet Paguirigan said, “…It is about the experience of these children because you’ll never know until when they are going to stay here because of their condition specially those who do not have access yet to medicines they need.”
In his welcome remarks, Cmdr. Ariel Halasan, deputy commander of the Naval Air Group (NAG), assured the participants that they will strive their best to provide the extra ordinary experience of fun fairs and joyride with their Navy assets. “But more than the experiences, we offer you our friendship and our admiration for living the ideals that our organization is advancing: your courage for living up with the challenges, your strength for not succumbing to it, your faith for believing in your dreams and aspirations; and your hope for dreaming big and aspiring for greater achievements,” Halasan added.
The activity wwas in conjunction with the nation’s observance of the 7th National Rare Disease Week, which joined hands with the rest of the world in celebrating the 9th World Rare Disease Day.
