News

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) ...

May.27, 2008

The First Remarkable FOP Forum in Taiwan

A Transnational Friendship Built on FOP, the First Remarkable FOP Forum in Taiwan Fibrodysplasia Qssificans Progressiva, FOP, is a very rare inherited disease with about1 in2 milli ...

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 ...

Apr.02, 2008

Marathonmad Neil O'Maonaigh-Lennon Runs for RD

Marathonmad Neil O'Maonaigh-Lennon Runs Around the Island For Rare Disorders Early in the morning, Neil O’Maonaigh-Lennon, an English teacher from United Kingdom, started ...

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 ...