IPA - International Pompe Association

Tong-Len Charitable Trust

http://www.tong-len.org/

Tong-Len is a non-governmental organisation (NGO) based in Himachal Pradesh, India. We support internally-displaced communities living in Himachal’s Kangra Valley

Tong-Len aims to help these communities achieve a secure and sustainable future by addressing the root causes of their poverty and ill-health through a range of education and health-based projects.

Although we do not work exclusively with children, child education and sponsorship is our primary concern.

We are registered in India, and are in the process of registering in the UK. 

The National Patient Travel helpline

http://www.patienttravel.org

Provides information about all forms of charitable, long-distance medical air transportation and provides referrals to all appropriate sources of help available in the national charitable medical air transportation network.

For the US only

Helping Hands, Loving Hearts Foundation

http://www.patienttravel.org

This is an organization set up to assist those individuals with a very rare and fatal disease, known as Acid Maltase Deficiency (AMD) Helping hands will provide financial assistantce for various expenses needed for those with AMD, while waiting for treatment to be available.

Thomas SCHALLER’s Personal Pompe Page

http://www.morbus-pompe.eu

Some basic information on Pompe disease in English and German.

Thomas SCHWAGENSCHEIDT’s Personal Pompe Pages

http://www.morbus-pompe.de

A huge collection of Pompe related information in German

The VERBEEK Family’s Homepage

http://www.familieverbeek.nl/

This site is in Dutch.

Glycogen Storage Disease Network (GSDnet)

http://listserv.icors.org/SCRIPTS/WA-ICORS.EXE?LIST=GSDNET

GSDNet is an unmoderated discussion list for all types of glycogen storage disease (GSD). The list is intended to be a resource and support network for individuals and families affected by one of the 11 types of GSD. Participation by medical and scientific professionals, and other relevant parties, is also encouraged.

Selbsthilfegruppe Glykogenose Deutschland e. V.

http://www.glykogenose.de

German association for patients suffering from all types of glykogen storage disorders, including Pompe disease. The site is in German.

The Pompe Center at Erasmus

http://www.pompecenter.nl

They are organising a Patient Registry in collaboration with the IPA.