Angie Weaver holds onto an unshakable belief that her daughter, who has a rare SCN2A disorder, will beat the odds.
Read More"Standing Together," by Carlos Guerrero Anderson
After multiple relapses, Carlos Guerrero-Anderson takes a chance on an experimental treatment for his rare cancer.
Read More"The Dream Job," by Zollie Yavarow
One scientist's journey to finding her dream job began with the announcement of the first gene-edited humans.
Read More"The Simple, Powerful Act of Sharing Knowledge," by Ana Pataki
What began as her family’s journey through our younger son’s rare pediatric cancer diagnosis became Ana’s path into patient advocacy.
Read More"Flying Fish," by Andrew Longenecker
A fish, a bird, and a flying child reshaped everything Andrew Longenecker thought he knew about love, science, and resilience.
Read More"Hope for Our Entire Family," by Jenifer Merriam
Jenifer Merriam's 14-year-old daughter started dropping her pencil and her hairbrush, and struggled with her studies. Something wasn’t right.
Read More"The Gift," by Gareth Baynam
Three Aboriginal children hold the key for unlocking important medical insights.
Read More"Figuring Out Who I Am," by Katie Stevens
Having become a mother at 18, this is supposed to be the year Katie Stevens figures out who she is — but then she discovers her 12-year-old son is terribly ill.
Read More"The Family Curse," by Allison Peck
Allison Peck and her husband are faced with the harsh reality of the genetic disease IBMPFD when their three-year-old outruns him.
Read More"Piece By Piece," by Kit Donahue
After witnessing the disconnect between researchers and families struggling with mental illness, Kit Donohue is determined to bridge the gap between science and the people it aims to help.
Read More"A Picture Frame," by Axel Lankenau
When Axel Lankenau is told that both of his sons have an ultra-rare, life-limiting neurological disorder, he is forced to confront a future he never imagined.
Read More"Never Giving Up, One More Time ," by Nikki Stusick
Science evolving is a good thing, but it’s not always the answer you hope for.
Read More"Finding Confidence," by Tanya Brown
Scientific Director Tanya Brown shares her story of growing in confidence as a scientist, inspired by her mother's resilience and perseverance.
Read More"That 'Spinning Room' Moment," by Jill Kiernan
This is a story about one family's rare disease journey and the birth of a community.
Read More"Wrestling with an Estranged Father's Legacy," by Jeff Levenson
In an unexpected twist of where he thought his life would take him, Jeff finds one of his greatest purposes in life raising awareness of and helping find therapies for rare diseases.
Read More"Navigating a World Not Built for Us," by Avery Roberts
Avery Roberts is breaking down barriers tackling misconceptions surrounding disability and giving a loud voice to the, often-forgotten, rare disease community.
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