Links
Disability
Government help
www.direct.gov.uk/DisabledPeople/fs/en.
Caring and Support
www.direct.gov.uk/CaringForSomeone/fs/en
The Benefit Enquiry Line
This is a confidential freephone service for disabled people and carers. You can call the Benefit Enquiry Line and ask them to send you a claim pack. They can also arrange for someone to help you fill out the form if required. Please note that the person you speak to may need to arrange for someone to phone you back.
Telephone: 0800 88 22 00
Textphone: 0800 24 33 55
You can also use the RNID Typetalk service.
The Benefit Enquiry Line is open 8.30 am to 6.30 pm Monday to Friday and 9.00 am to 1.00 pm Saturday.
HEALTH COST ADVICE LINES, Department of Health, NHS
For information on anything related to help with reducing NHS charges (prescriptions, eye tests, etc.), ring: 0845 850 1166
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Charity
International Pompe Association
www.WorldPompe.org
See the IPA website for a comprehensive list of international links to patient groups supporting Pompe Disease: www.worldpompe.org/interpom.html.
Muscular dystrophy Campaign
www.muscular-dystrophy.org
Climb: Children Living with Inborn errors in MetaBolism
www.climb.org.uk
The Acid Maltase Deficiency Association, A M D A,
AMDA was formed to assist in funding research and to promote public awareness of Acid Maltase Deficiency, also known as Pompe's Disease.
www.amda-pompe.org
United Pompe Foundation
In the USA 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.
www.unitedpompe.com
The Global Organization for Lysosomal Diseases
www.goldinfo.org
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Biotech Industry
Genzyme Pompe site including guides for for physicians and families
www.Pompe.com
Myozyme product information from Genzyme
www.Myozyme.com
Amicus Therapeutics
www.AmicusTherapeutics.com
AT2220 pipeline for Pompe Disease
www.AmicusTherapeutics.com/pipeline/at2220.asp
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Medical Support and Research
The Pompe Centre,
Erasmus Medical Centre, Rotterdam
www.pompecenter.nl
Inforesp - respiratory support information
www.inforesp.org/english.htm
Respiratory advice by Dr. John R. Bach
Rehabilitation of patients with neuromuscular disease, pulmonary disease, and home mechanical ventilation are the primary clinical focus of Dr. Bach, and he has authored more than 250 publications including 7 books on neuromuscular, pulmonary rehabilitation and non-invasive mechanical ventilation. He has lectured on these topics in over 30 countries.
www.doctorbach.com
Regulatory Bodies
European Medicines Agency, EMEA
www.emea.eu.int
Myozyme Public Assessment Reports from EMEA
www.emea.europa.eu/humandocs/Humans/EPAR/myozyme/myozymeM.htm
(Click on the diamond under your language)
US Food and Drug Administration
www.fda.gov
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Government, Department of Health
NSCAG transferred to the NHS in April 2007 and is now known as the National Commissioning Group (NCG).
National Commissioning Group (NCG)
http://www.ncg.nhs.uk
NCG Guidelines for Pompe Disease
http://www.ncg.nhs.uk/index.php/key-documents/lysosomal-storage-disorders/
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National Health ServiceNational Commissioning Group (NCG) - see above
LSD Expert Centres (NCG designated)
Great Ormond Street Hospital - Institute of Child Health
www.gosh.nhs.uk
Royal Manchester Children's Hospital
www.mangen.co.uk
Birmingham Children's Hospital
www.bch.nhs.uk
www.bch.org.uk/departments/clinicalchemistry/imd/laboratoryservice.htm
Addenbrookes, Cambridge
www.addenbrookes.org.uk/serv/clin/med/metabmed1.html
The Hope, Manchester
www.srht.nhs.uk
The National, London
www.uclh.org
The Royal Free, London
www.royalfree.org.uk
Clinical Trials
US NIH trials database
www.clinicaltrials.gov - enter "Pompe" into search field to find details of both closed and currently recruiting trials.
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