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HomeThe International Pompe Association (IPA) is an International federation of Pompe disease patients groups.
http://www.worldpompe.org/
The International Pompe Association (IPA) is an International federation of Pompe disease patients groups.
http://www.worldpompe.org/
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Home | worldpompe.org Reviews
https://worldpompe.org
The International Pompe Association (IPA) is an International federation of Pompe disease patients groups.
worldpompe.org
Patients Helping Patients
http://www.worldpompe.org/index.php/pompe-disease/patients-helping-patients
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. Here you find a list of articles contributed by individuals of the Pompe Community. You can just browse the list below and sort it by clicking on the column headings. This is a living list of articles. So if you want to share your experiences please submit your contribution. Always warm feet with heated socks.
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.
Testimonials on Video
http://www.worldpompe.org/index.php/pompe-disease/testimonials-on-video
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. Examples available on the web showing what Pompe Disease means for Patients in their daily lives and how to overcome challenges. Born Fighter 1 of 2. Born Fighter 2 of 2. Five Families (Video - part 1). Written by YouTube / Genzyme. Five Families (Video - part 2). Written by YouTube / Genzyme.
Memorials
http://www.worldpompe.org/index.php/pompe-disease/memorials
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. Created: 01 April 2012. Written by Marsha Zimmerman. The IPA would like to provide a place where you can post a picture or a memory, of someone special you have loved and lost. If you would like to post a picture and/or a memory of a loved one you have lost, please do the following:. Bet Cook, Australia, 1938-2012.
IPD Fundraiser 2015
http://www.worldpompe.org/index.php/international-pompe-day/ipd-fundraiser-2015
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. International Pompe Day Fundraiser Launched! Created: 14 April 2015. April 15, 2015. Goal of International Pompe Day Fundraiser. What is the Pause for Pompe? How do I participate? It’s easy to participate in the Pause for Pompe! All you have to do is stay completely still for 40 seconds! How do I donate to the Paus...
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Napapon -
http://napapon.blogg.se/2010/february
Ett försök till att kanske få ur sig en del tankar som cirkulerar i skallen.bra och dåliga så klart! Ja så är det helt enkelt.ska försöka igen.undrar om det blir nått intressant.ja vi får la se. Först ska vi se om min nya design på bloggen kommer fungera.kollar det imorgon nu är det dax för sängen.har suttit länge nu och skrivit.puss o go natt. 2010-02-09 @ 23:56:07 Permalink.
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...
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.
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.
Associazione italiana glicogenosi - Home
http://www.aig-aig.it/default.asp?idtiponews=529
2013 Napoli (NA) Incontro con le famiglie. 2005 Vico Equense (NA). 2001 Rocca di Papa (Roma). Voce Amica - Prendiamoci per mano. Gestione Socio-Emotiva della malattia. Le Glicogenosi - Vari tipi. Glicogenosi - Tipo II malattia di Pompe. Un palloncino per sperare. Guide sulla disabilità - Aggiornamento. Nella sezione "Guide sulla disabilità" è stato rilasciato l'aggiornamento del file "Guida alle Agevolazioni Fiscali. Presentata al XVI Congresso AIM l’applicazione sulla malattia di Pompe. Malattie Rare e ...
Associazione italiana glicogenosi - Convegni AIG
http://www.aig-aig.it/approfondimento.asp?Id=1221
2013 Napoli (NA) Incontro con le famiglie. 2005 Vico Equense (NA). 2001 Rocca di Papa (Roma). Voce Amica - Prendiamoci per mano. Gestione Socio-Emotiva della malattia. Le Glicogenosi - Vari tipi. Glicogenosi - Tipo II malattia di Pompe. Annualmente, indicativamente nei mesi di maggio o giugno. AIG organizza il proprio Convegno. La durata del Convegno solitamente è di due giorni Sabato e Domenica. L'inizio è intorno alle 14:00 di Sabato e si conclude la Domenica intorno alle 12:30. 2005 Vico Equense (NA).
Associazione italiana glicogenosi - Contatti AIG
http://www.aig-aig.it/Domande.asp?idtiponews=457
2013 Napoli (NA) Incontro con le famiglie. 2005 Vico Equense (NA). 2001 Rocca di Papa (Roma). Voce Amica - Prendiamoci per mano. Gestione Socio-Emotiva della malattia. Le Glicogenosi - Vari tipi. Glicogenosi - Tipo II malattia di Pompe. Associazione di Volontariato ONLUS di Diritto. Via Roma, 2/G. Vice Presidente: Sig.ra. Segnala ad un amico. La notizia scientifica del mese. La notizia scientifica del mese. Giornata delle malattie rare. Trailer film Misure straordinarie. ITunes per AIG di Marco Giorgi.
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.
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&#...
United Pompe Foundation
http://www.unitedpompe.com/guestbook.cfm
EP Magazine Article Living with Pompe Disease. 2016 UPF/DUKE INFANTILE MEETING. 4th ANNUAL UPF/DUKE ADULT POMPE PATIENT MEEETING. POMPE MARATHON:My name is Paul McIntosh. I am 24 years old and I am a second year medical student at the University of North Carolina School of Medicine. Two years ago I was diagnosed with late onset Pompe disease. United States Pompe Community Update - October 17, 2014. UNITED STATES POMPE COMMUNITY UPDATE, AUGUST 1, 2014. DUKE INFANTILE ONSET POMPE PATIENT MEETING 2014.
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International Pompe Association
IPA - International Pompe Association. Affects the lives of an estimated 5,000 to 10,000 people all over the world. A progressive, debilitating and life-threatening disease, infants, children and adults who inherit the defective gene from each parent are susceptible to getting Pompe. More information on Pompe Disease. Patients need a network of support in order to ease the hardships that these patients and their families go through. Support not only for medical reasons but also to deal with emotions ...
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IPA Members and Contacts. IPA Reviews and Reports. IPD Gallery 2015 (Uploads). IPD Gallery 2014 (Uploads). Funds For Children In Need. About this Forum / How to Register. Welcome to the International Pompe Association (IPA). Pause for Pompe" Fundraiser is open. More information: Press Release. Other options for donations see How to donate to the 2015 International Pompe Day Fundraiser. Australia has admitted life-saving drug for Pompe disease in the Australian Life-Saving Drug Programme. In Australia, in...
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IPA Members and Contacts. IPA Reviews and Reports. IPD Gallery 2015 (Uploads). IPD Gallery 2014 (Uploads). Funds For Children In Need. About this Forum / How to Register. Welcome to the International Pompe Association (IPA). Pause for Pompe" Fundraiser is open. More information: Press Release. Other options for donations see How to donate to the 2015 International Pompe Day Fundraiser. Australia has admitted life-saving drug for Pompe disease in the Australian Life-Saving Drug Programme. In Australia, in...
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IPA Members and Contacts. IPA Reviews and Reports. IPD Gallery 2015 (Uploads). IPD Gallery 2014 (Uploads). Funds For Children In Need. About this Forum / How to Register. Welcome to the International Pompe Association (IPA). Pause for Pompe" Fundraiser is open. More information: Press Release. Other options for donations see How to donate to the 2015 International Pompe Day Fundraiser. Australia has admitted life-saving drug for Pompe disease in the Australian Life-Saving Drug Programme. In Australia, in...
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