Lozano is a rare disease mom, neuroscience Ph.D. candidate at UC Davis, and board member for the PURA Syndrome Foundation. In May, a historic moment in science and medicine was captured in a single ...

Thousands of times per year, a family’s moment of joy turns to unexpected grief. A seemingly healthy infant stops smiling or ...

LONDON--(BUSINESS WIRE)--Alexion, AstraZeneca Rare Disease has launched a new electronic storybook (e-book) to support children living with rare kidney disease, atypical Haemolytic Uraemic Syndrome ...

Across America, millions of parents of children with rare diseases are in a race against time, hoping that new treatments will be developed fast enough to save their kids. Thanks to advances in ...

For families with children facing rare medical conditions, hearing that treatment will require neurosurgery is an immensely overwhelming moment. Instantly, deep fear sets in and critical questions ...

QUINCY, Ill. (WGEM/Gray News) - The Kempf family says they have received devastating news about their children when it comes to a rare disease. Both of their children have been diagnosed with ...

Growth charts for children with rare genetic disorders - giving healthcare professionals and families clearer guidance on how a child is developing - have been created by an international team, led by ...

Ever since her 15-year-old son Cole was diagnosed with a rare, progressive illness called Hunter syndrome when he was 2, Kim Stephens has been waiting. Waiting to see if Cole will lose his ability to ...

Five-year-old Adeline Strohbeck lugged a box of White Cheddar Cheetos Puffs across the grass and watched as the other children and their parents started to arrive. Like a small mayor with a large ...