Other Links
The following are a collection of other links that we have found useful. Please feel free to recommend other links that are appropriate to OHF via email.

PH Mutations Database

Gill Rumsby curates a comprehensive on-line database of mutations in PH1 and PH2.

 

OHF AGT Mutations Polymorphisms

There are three tables in all 1. Simple replacements, 2. More complex insertions, deletions and splice site variations, 3. Polymorphisms. (provided by Christopher J. Danpure, BSc PhD FMedSci)

 

PH-Selbsthilfe e.V.

Vist the OHF German Patient Support Group. (Website is all in German.)

 

National Organization for Rare Disorders

The National Organization for Rare Disorders (NORD) is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.

 

Children's Liver Alliance

Originally created for those afflicted with Biliary Atresia , BALT now serves those touched by Alagille's Syndrome, Alpha-1 Antitrypsin, Cystic Fibrosis, Galactosemia, Glycogen Storage Diseases, Neonatal Hepatitis, Tyrosinemia, Wilson's Disease and many other pediatric liver diseases. Many excellent resources for kidney patients, including transplantation and support.

 

Renniere E.V.

A foundation located in Germany to support pediatric nephrology patients. Dr. Bernd Hoppe, a member of the OHF Medical Advisory Board, is one of the founders of this organization. Recent fundraising events include a relay race marathon run by children along with Dr. Hoppe. German Language site.

 

NIDDK Directory of Kidney and Urologic Diseases Organizations

The National Institute of Diabetes and Digestive and Kidney Diseases maintains a long list of organizations.

 

National Kidney Foundation

This is the National Kidney Foundation's list of nephrology links and other resources.

 

MyMedSchedule.com

MyMedSchedule is a great medication reminder. Create your own medication chart to clearly show what times you should take each medication or supplement, and how much to take.

 

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