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)

 

Air transportation for patients who are in financial need and cannot afford the cost of air travel. For more information contact the following agencies

National Patient Travel Center

4620 Haywood Road

Virginia Beach, VA 23455

757-512-5287

www.patienttravel.org/contact.html

 

Angel Flight

1515 East 71st Street, Ste. 312

Tulsa, OK 74136

Phone: 918.749.8992

www.angelflight.com/

 

Air Compassion America

4620 Haygood Road, Suite 1

Virginia Beach, VA 23455

866-270-9198

www.aircompassionamerica.org/

 

Air Compassion for Veterans

4620 Haygood Road, Suite 1

Virginia Beach, VA 23455

888-662-6794

757-318-9136

www.aircompassionforveterans.org/

 

Hyperoxalurie Center Köln - Cologne Hyperoxaluria Center

Vist the Cologne Hyperoxaluria Center. (Website is all in German.)

 

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.

 

Disclaimer: The OHF Foundation is not an accredited medical institution. It is a non-profit organization committed to raising funds for OHF research and various OHF programs. While we are happy to share information, none of the information in this section of the web site is the expressed interest of or a recommended course of action by the OHF Foundation. The information on this Web site is provided by the OHF Foundation with the understanding that the publisher, authors, and advisors are not rendering medical or professional services. Medicine is a rapidly changing area, and efforts have been made to provide information that is medically correct at the time of initial posting. The material provided should be used only as a general guide and not the ultimate source of information and should not be used to make personal or professional decisions. The OHF shall have neither liability not responsibility to any person or entity with respect to any loss or damage alleged to be caused directly or indirectly by the information presented in this journal/server.