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...
australianpompe.com
Pompe | Links
http://australianpompe.com/links
Diet & Exercise. Pompe Newborn Screening Request. Press Release: Government approves lifesaving treatment. Press Release: Children to Receive Treatment. AMDA (Acid Maltase Deficiency Association). Association for Glycogen Storage Disease (UK) Limited. Federal Department of Health. Life Saving Drugs Program. Federal Department of Health. Myozyme Application form and Guidelines. No products in the basket.
geneticdisorderinfo.wikispaces.com
Genetic Disorder Info - Pompes
http://geneticdisorderinfo.wikispaces.com/Pompes
Skip to main content. Create interactive lessons using any digital content including wikis with our free sister product TES Teach. Get it on the web. Loss of muscle and weight, enlarged liver and heart. Weakening, respiratory failure. Cause of the disorder. A lack in the enzyme acid maltase, usually the breakdown of glycogen, stores a form of sugar used for energy. This is treated symptomatically, and physical therapy in some cases. Pre-screening this disease is challenging because of other diseases with...
pompecanada.com
Links - Canadian Association of Pompe
http://www.pompecanada.com/links
AMDA - Acid Maltase Deficiency Association. Australian Pompe's Association. IPA - International Pompe Association. New Zealand Pompe Network. Other Patient and Advocacy Groups. AGSD - The Association for Glycogen Storage Disease. ASGD - The Association for Glycogen Storage Disease UK. CORD - Canadian Organization for Rare Disorders. CFA - Canadian Fabry Association. NORD - National Organization for Rare Disorders. Regroupement québécois des maladies orphelines. Starlight Children's Foundation.
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&#...
worldpompe.org
Int*l Pompe Day
http://www.worldpompe.org/index.php/international-pompe-day
IPA Board, Advisors and More. IPA Members and Contacts. IPA Reviews and Reports. IPD Gallery 2016 (Uploads). IPD Gallery 2015 (Uploads). IPD Gallery 2014 (Uploads). Funds For Children In Need. The IPA is excited to announce that the international Pompe community has chosen April 15 as the annual International Pompe Day! There are several ways that you can participate:. Upload a photo to the International Pompe Day website. Participate in the International Pompe Day Art Contest! Created: 14 April 2016.
maddiesmission.blogspot.com
Maddie's Mission: Valuable References
http://maddiesmission.blogspot.com/p/reference-information.html
Experiences of a family along the journey of Pompe Disease. PLEASE FIND A FEW LINKS BELOW WITH VALUABLE INFORMATION. Pompe disease and Pharmaceutical Companies. Http:/ www.bmrn.com/patients-physicians/pompe-disease.php. Acid Maltase Deficiency Association (AMDA). International Pompe Association (IPA). Association for Glycogen Storage Disease (AGSD). United Pompe Foundation (UPF). Running for Rare Diseases. Advocacy and support services. Muscular Dystrophy Association (MDA). Parent to Parent (P2P) USA.
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: 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.
