psod.org.ph

Philippine Society for Orphan Disorders

Everyone has a right to life. Everyone has a right to life. Persons born afflicted with rare or orphan disorders are a vulnerable and special population. Though they are small in population, Filipinos afflicted with rare disease must also be ensured with better access to health by the government through inclusion in the universal health agenda as well as the social health insurance coverage on the basic premise that everyone has a right to life and right to quality life. Raise Your Hands for Rare PH.

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Philippine Society for Orphan Disorders | psod.org.ph Reviews

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Everyone has a right to life. Everyone has a right to life. Persons born afflicted with rare or orphan disorders are a vulnerable and special population. Though they are small in population, Filipinos afflicted with rare disease must also be ensured with better access to health by the government through inclusion in the universal health agenda as well as the social health insurance coverage on the basic premise that everyone has a right to life and right to quality life. Raise Your Hands for Rare PH.

<META> KEYWORDS

1 about us

2 who we are

3 board of directors

4 our goals

5 programs

6 rare diseases

7 current registry

8 meet the patients

9 blog

10 partners and friends

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about us,who we are,board of directors,our goals,programs,rare diseases,current registry,meet the patients,blog,partners and friends,partners,friends,care for rare,events,social,join our newsletter,name,latest video,location,into@psod.org ph

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Philippine Society for Orphan Disorders | psod.org.ph Reviews

https://psod.org.ph

Everyone has a right to life. Everyone has a right to life. Persons born afflicted with rare or orphan disorders are a vulnerable and special population. Though they are small in population, Filipinos afflicted with rare disease must also be ensured with better access to health by the government through inclusion in the universal health agenda as well as the social health insurance coverage on the basic premise that everyone has a right to life and right to quality life. Raise Your Hands for Rare PH.

INTERNAL PAGES

psod.org.ph

1

Friends - PSOD

http://www.psod.org.ph/partners-and-friends/friends

Bernan and Boy Garsulao. Bob, Ruth and Tom Owen. Brotherhood of Christian Businessman and Professionals. Cale and Pepsi Aro. Cardinal Santos Medical Center. City Social Services and Development Office (CSSDO Davao). Cong Arthur Pingoy, Jr., MD. Council for the Welfare of Children. Department of Social Welfare and Development. Dina, Gerry and Shereen Silva. Dolores Magdaraog and Family. Down Syndrome Association of the Philippines, Inc. Dr Jaime Galvez Tan. Edgardo Katigbak and Family. Frank and Inez Reyes.

2

Partners and Friends - PSOD

http://www.psod.org.ph/partners-and-friends

Thru a memorandum of agreement, PSOD and IHG agreed to collaborate and form a partnership to uphold the Right to Life” and Right to Access Health Support” for people born and afflicted with rare (genetic) disorders. The major thrust of the MOA is the referral of patients. Under the MOA, PSOD refers to IHG inquiries received from patient families who need assistance in the following:. Diagnosing and/or confirming a rare disease condition of a family member. Managing the condition of the rare disease, and.

3

Programs - PSOD

http://www.psod.org.ph/about-us/programs

After 5 years since our formation as an organization, we have now clustered the PSOD activities under 4 general programs:. Patient and Family Welfare which is the core of the program. Awareness and Advocacy which is the pre-requisite in order to tap partners and support. Resource Generation which is the life-force, so to speak. Program Development which is the way to grow the organization and the expand our advocacy. 1 Patient and Family Welfare. Referral for diagnosis and medical management. Networking ...

4

Feb 28 is Rare Disease Day worldwide - PSOD

http://www.psod.org.ph/news/feb-28-is-rare-disease-day-worldwide

Feb 28 is Rare…. Feb 28 is Rare Disease Day worldwide. February 6, 2015. 2015 marks eight consecutive, successful years of Rare Disease Day. Continuing the momentum, Rare Disease Day 2015 puts the focus on the daily lives of patients, families and caregivers who are Living with a Rare Disease. Even though the campaign started as a European event, it has progressively become a world event, with over 80 countries participating in 2014. For more info, visit www.rarediseaseday.org. March 19, 2016. Since 1991...

5

Wear That You Care - Philippines - PSOD

http://www.psod.org.ph/news/wear-that-you-care-philippines

Wear That You Care…. Wear That You Care – Philippines. February 6, 2015. Wear your favorite pair of jeans and your blue denim ribbon during the Rare Disease Awareness Week! Got an old pair of blue jeans or denim? Make your own blue denim jeans ribbon for you and your family and friends to show the world that you are in solidarity with the international rare disease community for better health services and particularly the PSOD in promoting the welfare of Filipinos with rare disorders! Twenty (20) parents...

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pompemom.blogspot.com

Pompe Mom's Diary: Before Trip to Taiwan

http://pompemom.blogspot.com/2011/10/before-trip-to-taiwan.html

Thanks to all the prayers, help and support from friends and families, my girls have 2nd chance of life. Still, I hope that there will be a well and sustainable medical system to protect the right of getting free treatment for my girls and all the other LSD patients in Malaysia one day. Wednesday, October 12, 2011. Before Trip to Taiwan. It had been a long time that I failed to write down anything for almost a month, felt a little bit of guity but was really out of time. Did my plan work out? Even before...

pompemom.blogspot.com

Pompe Mom's Diary: Aug 20, 2011

http://pompemom.blogspot.com/2011_08_20_archive.html

Thanks to all the prayers, help and support from friends and families, my girls have 2nd chance of life. Still, I hope that there will be a well and sustainable medical system to protect the right of getting free treatment for my girls and all the other LSD patients in Malaysia one day. Saturday, August 20, 2011. MPS II Brothers From Mersing. Nazmi less than 1 year old just started walking,. His palms were still normal then. Story and Photos Shared by Puan Sunarti. Video by KF and Lee. Note on MPS II.

pompemom.blogspot.com

Pompe Mom's Diary: Sep 14, 2011

http://pompemom.blogspot.com/2011_09_14_archive.html

Thanks to all the prayers, help and support from friends and families, my girls have 2nd chance of life. Still, I hope that there will be a well and sustainable medical system to protect the right of getting free treatment for my girls and all the other LSD patients in Malaysia one day. Wednesday, September 14, 2011. I am going to Taipei soon. KF wrote on 14 Sep 11. Subscribe to: Posts (Atom). View my complete profile. Malaysia Lysosomal Diseases Association. Acid Maltese Deficiency Association. 这一路走过来&#...

pompemom.blogspot.com

Pompe Mom's Diary: Aug 27, 2011

http://pompemom.blogspot.com/2011_08_27_archive.html

Thanks to all the prayers, help and support from friends and families, my girls have 2nd chance of life. Still, I hope that there will be a well and sustainable medical system to protect the right of getting free treatment for my girls and all the other LSD patients in Malaysia one day. Saturday, August 27, 2011. 这一路走过来，有两位我一定要谢谢的贵人；那就是我的家婆和我的妈妈。如果没有他们我想现在的我不知会是怎么样？而家婆总是在每两个星期五我带两位公主去KL放药时来我家报到，帮我看看我的王子。从来没有听过她言累。。。妈！真的有您们真好，但愿您们都能身体健健康康，每一天都能安枕无忧。。。 I Decided To Get A Portable Hard Disk. I think it's ...

pompemom.blogspot.com

Pompe Mom's Diary: Jan 11, 2012

http://pompemom.blogspot.com/2012_01_11_archive.html

Thanks to all the prayers, help and support from friends and families, my girls have 2nd chance of life. Still, I hope that there will be a well and sustainable medical system to protect the right of getting free treatment for my girls and all the other LSD patients in Malaysia one day. Wednesday, January 11, 2012. Now, I am on my way to be back to normal. But it shall not be long as Chinse New Year is round the corner. Wrote on 11 Jan 12. Subscribe to: Posts (Atom). View my complete profile. 这一路走过来&#652...

pompemom.blogspot.com

Pompe Mom's Diary: MPS II Brothers From Mersing

http://pompemom.blogspot.com/2011/08/mps-ii-brothers-from-mersing.html

Thanks to all the prayers, help and support from friends and families, my girls have 2nd chance of life. Still, I hope that there will be a well and sustainable medical system to protect the right of getting free treatment for my girls and all the other LSD patients in Malaysia one day. Saturday, August 20, 2011. MPS II Brothers From Mersing. Nazmi less than 1 year old just started walking,. His palms were still normal then. Story and Photos Shared by Puan Sunarti. Video by KF and Lee. Note on MPS II.

pompemom.blogspot.com

Pompe Mom's Diary: Aug 11, 2011

http://pompemom.blogspot.com/2011_08_11_archive.html

Thanks to all the prayers, help and support from friends and families, my girls have 2nd chance of life. Still, I hope that there will be a well and sustainable medical system to protect the right of getting free treatment for my girls and all the other LSD patients in Malaysia one day. Thursday, August 11, 2011. A Great Fighter Mom. We were destined to meet up with each other. Why? I truly salute her for her courage, for her non giving up spirit. Way to go, Puan Sunarti. Wrote on 11 Aug 2011. I was an e...

pompemom.blogspot.com

Pompe Mom's Diary: Taiwan Trip - Tao Yuan

http://pompemom.blogspot.com/2011/10/taiwan-trip-tao-yuan.html

Thanks to all the prayers, help and support from friends and families, my girls have 2nd chance of life. Still, I hope that there will be a well and sustainable medical system to protect the right of getting free treatment for my girls and all the other LSD patients in Malaysia one day. Monday, October 24, 2011. Taiwan Trip - Tao Yuan. So you see Tao Yuan was the place for us to get alliance with the other societies. We didn't have time to explore around Tao Yuan besides Zhong Li's Night Market. European...

pompemom.blogspot.com

Pompe Mom's Diary: I am going to Taipei soon

http://pompemom.blogspot.com/2011/09/i-am-going-to-taipei-soon.html

Thanks to all the prayers, help and support from friends and families, my girls have 2nd chance of life. Still, I hope that there will be a well and sustainable medical system to protect the right of getting free treatment for my girls and all the other LSD patients in Malaysia one day. Wednesday, September 14, 2011. I am going to Taipei soon. KF wrote on 14 Sep 11. Subscribe to: Post Comments (Atom). View my complete profile. Malaysia Lysosomal Diseases Association. Acid Maltese Deficiency Association.

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Philippine Society for Orphan Disorders

Everyone has a right to life. Everyone has a right to life. Persons born afflicted with rare or orphan disorders are a vulnerable and special population. Though they are small in population, Filipinos afflicted with rare disease must also be ensured with better access to health by the government through inclusion in the universal health agenda as well as the social health insurance coverage on the basic premise that everyone has a right to life and right to quality life. Raise Your Hands for Rare PH.

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