unitedpompe.com

United Pompe Foundation

EP Magazine Article Living with Pompe Disease. The United Pompe Foundation was formed to assist patients and/or their families with medical costs and other expenses that these patients and families face and may not be able to cover, or fully cover, through their insurance. If you would like to make a donation in memory of Alicia. If you would like to make a donation to the. Alicia Blackington Wagle Scholarship Fund. 4th ANNUAL UPF/DUKE ADULT POMPE PATIENT MEEETING. Amicus Therapeutics Strengthens Biologi...

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EP Magazine Article Living with Pompe Disease. The United Pompe Foundation was formed to assist patients and/or their families with medical costs and other expenses that these patients and families face and may not be able to cover, or fully cover, through their insurance. If you would like to make a donation in memory of Alicia. If you would like to make a donation to the. Alicia Blackington Wagle Scholarship Fund. 4th ANNUAL UPF/DUKE ADULT POMPE PATIENT MEEETING. Amicus Therapeutics Strengthens Biologi...

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United Pompe Foundation | unitedpompe.com Reviews

https://unitedpompe.com

EP Magazine Article Living with Pompe Disease. The United Pompe Foundation was formed to assist patients and/or their families with medical costs and other expenses that these patients and families face and may not be able to cover, or fully cover, through their insurance. If you would like to make a donation in memory of Alicia. If you would like to make a donation to the. Alicia Blackington Wagle Scholarship Fund. 4th ANNUAL UPF/DUKE ADULT POMPE PATIENT MEEETING. Amicus Therapeutics Strengthens Biologi...

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unitedpompe.com

1

United Pompe Foundation

http://www.unitedpompe.com/articles2.cfm?Article_Selected=528

EP Magazine Article Living with Pompe Disease. Myozyme Produced at the 2000 L Bioreactor Scale to Receive Accelerated Approval. Myozyme Produced at the 2000 L Bioreactor Scale to Receive Accelerated Approval. Date: November 17, 2008. New PDUFA Date Set for February 28, 2009. Genzyme Corporation (Nasdaq: GENZ) today announced that the FDA plans an Accelerated Approval for Myozyme. On October 21, 2008, the FDA’s Endocrinologic and Metabolic Drugs Advisory Committee affirmed by a 16 to 1 vote that the...

2

United Pompe Foundation

http://www.unitedpompe.com/aboutpompe.cfm

EP Magazine Article Living with Pompe Disease. Pompe disease is inherited in an autosomal recessive manner, meaning that an affected individual must inherit an abnormal allele from both parents. Thus, the probability of carrier parents having a child with Pompe disease is one in four for each pregnancy. Electron microscopy demonstrates the various features of baseline skeletal muscle pathology in an infantile Pompe patient (magnification 6500x image courtesy of Genzyme Pathology). 1 van den Hout HM, Hop ...

3

United Pompe Foundation

http://www.unitedpompe.com/index.cfm

EP Magazine Article Living with Pompe Disease. The United Pompe Foundation was formed to assist patients and/or their families with medical costs and other expenses that these patients and families face and may not be able to cover, or fully cover, through their insurance. If you would like to make a donation in memory of Alicia. If you would like to make a donation to the. Alicia Blackington Wagle Scholarship Fund. 2016 UPF/DUKE INFANTILE MEETING. 4th ANNUAL UPF/DUKE ADULT POMPE PATIENT MEEETING. Amicus...

4

United Pompe Foundation

http://www.unitedpompe.com/articles.cfm

EP Magazine Article Living with Pompe Disease. Clinical Trial Experiences of Patients. BioMarin is currently seeking patients for a Phase 3 clinical trial in Late Onset Pompe Disease. Amicus Therapeutics Announces First Patient in Phase 2 Study for Pompe Disease. UNITED STATES POMPE COMMUNITY UPDATE, AUGUST 1, 2014. Genzyme Receives Label Expansion for LumizymeÂ (alglucosidase alfa) in the United States for the treatment of Pompe Disease. Expression of Hope 2014. ADVANCE Study Fact Sheet. United States P...

5

United Pompe Foundation

http://www.unitedpompe.com/clintrial.cfm

EP Magazine Article Living with Pompe Disease. Usually focuses on the activity of the new product or drug as a single agent in an open study. Phase II trials look at side effects and how well the drug works. A phase II trial is a noncomparative study, meaning that the therapeutic effects and side effects of the agent are not compared to another drug or a placebo. For more information regarding the clinical trial process visit: http:/ www.nih.gov/health/clintr.htm. 2016 UPF/DUKE INFANTILE MEETING. POMPE M...

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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.

running4rare.org

2013 Runners and RARE Community Partners | Running for Rare Diseases

http://running4rare.org/runners-and-patients/list-of-runners

Darr; Skip to Main Content. Runners and RARE Community Partners. 2016 Runners and RARE community partners. 2015 Runners and RARE Community Partners. 2014 Runners and RARE Community Partners. 2013 Runners and RARE Community Partners. Runners and RARE Community Partners. 2013 Runners and RARE Community Partners. 2013 Runners and RARE Community Partners. 9 comments on “ 2013 Runners and RARE Community Partners. March 18, 2011 at 9:25 pm. Thanks so much Phil, and every member of the Genzyme team! Thank you D...

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.

audentespatientadvocacy.com

General Resources - Audentes Advocacy

http://audentespatientadvocacy.com/about/resources

Sign Up for Updates. Be included in our updates. Subscribe for updates, including new stories. Courageous Patients. Bold Effort. European Organization for Rare Diseases (EURORDIS). National Organization for Rare Disorders (NORD). National Society of Genetic Counselors. NIH Genetic and Rare Diseases Information Center. National Institute of Neurological Disorders and Stroke, NIH. Online Mendelian Inheritance in Man (OMIM). Congenital Muscle Disease International Registry (CMDIR).

audentespatientadvocacy.com

Pompe - Audentes Advocacy

http://audentespatientadvocacy.com/about/pompe

Sign Up for Updates. Be included in our updates. Subscribe for updates, including new stories. Pompe disease is caused by lack of an enzyme (a kind of protein) in the body called acid alpha glucosidase (GAA) that is necessary for the breakdown of glycogen (a type of carbohydrate) within the cell (2). Without being broken down, glycogen accumulates in certain organs and tissues, especially muscles, and impairs their ability to function normally. There are many autosomal recessive diseases, including pheny...

purplelv93.wordpress.com

Status Quo | M.E.G.'s Confessional

https://purplelv93.wordpress.com/2012/11/25/status-quo

My Mystery Disease is Pompe. Laquo; The Lab Rat Chronicles. Lumizyme on the go. On November 25, 2012. I’m dusting off the blog. I have neglected it. Does that mean there has been nothing to report, or that I have been too busy to sit down and write about it? Well, a little bit of both. So what else have I been up to and where have I been? I spoke at a United Pompe Foundation. So, as you can see…it has really been fairly routine….for me. Leanna and I with my favorite puppy at Disney California Adventure.

en.wikipedia.org

Glycogen storage disease type II - Wikipedia, the free encyclopedia

https://en.wikipedia.org/wiki/Glycogen_storage_disease_type_II

Glycogen storage disease type II. From Wikipedia, the free encyclopedia. This article needs additional citations for verification. Please help improve this article. By adding citations to reliable sources. Unsourced material may be challenged and removed. Learn how and when to remove this template message. Glycogen storage disease type II. Classification and external resources. Glycogen storage disease type II. Glycogen Storage Disease Type II (Pompe Disease). Glycogen storage disease type II. Infantile-...

helpinghaley.com

Helping Haley | Promoting awareness of Pompe Disease and to provide information about Haley Hayes' progress

http://helpinghaley.com/pompedisease.php

Links to learn more about Pompe Disease, including a brief summary. Learn more about Pompe Disease? Http:/ www.pompe.com. Http:/ www.amda-pompe.org. Http:/ www.unitedpompe.com. Http:/ www.mda.org. Brief Summary on Pompe Disease. Stay Up To Date. Follow us on Facebook. View our most recent posts below. Designed by Jason Winter WinternetWeb.com.

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unitedpompe.com

United Pompe Foundation

EP Magazine Article Living with Pompe Disease. The United Pompe Foundation was formed to assist patients and/or their families with medical costs and other expenses that these patients and families face and may not be able to cover, or fully cover, through their insurance. If you would like to make a donation in memory of Alicia. If you would like to make a donation to the. Alicia Blackington Wagle Scholarship Fund. 4th ANNUAL UPF/DUKE ADULT POMPE PATIENT MEEETING. Amicus Therapeutics Strengthens Biologi...

unitedpompe.org

United Pompe Foundation

EP Magazine Article Living with Pompe Disease. The United Pompe Foundation was formed to assist patients and/or their families with medical costs and other expenses that these patients and families face and may not be able to cover, or fully cover, through their insurance. If you would like to make a donation in memory of Alicia. If you would like to make a donation to the. Alicia Blackington Wagle Scholarship Fund. 4th ANNUAL UPF/DUKE ADULT POMPE PATIENT MEEETING. Amicus Therapeutics Strengthens Biologi...

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