News

Mar.17, 2009

Best Memories to Our Close Friend, Pam Faith Eisen

At the beginning of our foundation, instead of merely focusing on domestic patientservices, we also kept contact with international rare diseases organizations forlatest information such as designate ...

Feb.28, 2009

Low-Protein Food Coupon Is Now on the Go

Dietary control is the most effective treatment for patients with inherited metabolicdisorders like Phenylketonuria, Maple Syrup Urine Disease, Amino Acid MetablicDisorders and Homocystinur ...

Dec.10, 2008

Tissue Bank: Progressing Report

In order to make sure biospecimen and information provided by Taiwan RareDisease Tissue Bank can properly meet future research demand, the third expertmeeting was held in May to discuss the con ...

Oct.17, 2008

Book Release: 3/4 of Happiness

What is happiness? How to define completeness? Can we evaluate its value bycomparing numbers and figures? Is3/4definitely has less value than1? Here’sa story of3/4; a story about how a fami ...

Sep.05, 2008

Rare Disease Group Home

Rare Disease Group Home, a Supported and Independent Life In2008, in order to help rare disease patients of all ages live a quality life, an innovative pilot program was introduced to patients ...

May.27, 2008

Living with FOP

By Moira Liljesthröm, FOP mom FOP is the short name for fibrodysplasia ossificans progressiva, an extremely rare genetic condition that affects1 in2 million people. My youngest son, (9) ...