News

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) ...

Apr.28, 2008

Upcoming: A Forum on FOP

A Forum on Fibrodysplasia Ossificans Progressiva, FOP, The Disease and Its Attending Nursing Fibrodysplasia ossificans progressiva, myositis ossificans progressive, FOP, is a very unu ...

Apr.03, 2008

New Subsidy for Pompe Disease Screening

One of the foundation’s purposes is to prevent and provide guidance to rare disorders. With the change in society and development of the economy, the world’s birth rate is declining rapi ...

Feb.10, 2008

Mommy's Story Hour Campus Advocacy Project

New program: Mommy's Story Hour campus advocacy project Being a rare disease patient in school, educational inequality is not rarely seen, which often leads to misunderstanding, low learning ...