The Face Forward is for young adults with rare genetic, metabolic, and mitochondrial conditions. The mission of the project is to develop leadership, advocacy and life skills, in order to achieve good health, positive behavior, socioeconomic success and civic engagement. It is for young adults […]
Shire is proud to introduce the Shire ACES Scholarship Program! This program recognizes academic achievement in the lysosomal storage disease (LSD) community. High-school graduates or GED credential recipients who have been diagnosed with an LSD are eligible to apply. A $5000 scholarship will awarded for […]
CRUCIAL QUEST: Parents helping organize study to help find a cure for their son with a rare disease.
Seeking a Cure for Jonah By Jose Bayona Brooklyn -Jonah Weishaar looks like a normal, healthy two year old as he giggles while running around a playground near his Brooklyn home. But his parents, Jill and Jeremy, know their son is in a race against […]
Orphan diseases affect 25 million people in the United States. By Taylor Selcke, MN Daily.com For Michael Zimanske, years of holidays and birthdays spent in hospitals began after a routine kindergarten check-up. The doctor said he wasn’t growing like a normal 5-year-old, and full body […]
Announcing the Launch of RareArtist.org an Online Gallery for Artists Affected by Rare Diseases Art is the expressive medium that we all use when capturing the trials and triumphs of our human existence. For rare disease patients, life’s meaning takes on the greater significance that […]