Macy Gilson: December 30, 2021: Colbie’s Story
Once Upon A Gene Apple Podcast: A Rare Collection is a monthly series featuring people from the rare disease community
The Mighty: Improving Research and Therapies for Rare Disease
Livingston Daily: A Look Into a 3-Year-Old Boy’s Battle with KIF1A, a Rare Disease Without a Treatment or Cure
INFORUM: Fundraiser Planned for Southeast North Dakota Boy With Rare Neurological Disorder
Kamloomps News: Kamloops Parents of Child With Rare Genetic Condition Move to Calgary For Therapy
KFVS12: Hope for Harlin: Cape Girardeau Co. Toddler Battles Rare Condition
Good Morning America: Only 300 People Are Known to Live With This Toddler’s Same Rare Degenerative Disease
24 Hours of Rare: Teaming up on Single Gene Diseases: A Collaborative Approach to Treatment
Maple Lake Messenger: Local Family Seeks to Raise Awareness
Love What Matters Features Colbie’s KIF1A Story
Adnexi: Ideal Collaborations to Develop Treatments & Cures
KIF1A.ORG Joins CZI Rare As One Network & Awarded $450,000 Grant
Humankind: Boys Beam as They Race Through the Hallways in Walkers
WBTV: Emily Cook Finds Her People at a New KIF1A Conference
The Story Collider: Power of Patients: Stories About Taking Back the Narrative
El Pais: Tenemos 10 años para encontrar un tratamiento para la enfermedad rara de nuestro hijo
Spain News: Rare Disease Day: “We Have 10 Years to Find a Treatment for Our Child’s Rare Disease”
Post Independent: Glenwood Students Learn about “Rare Disease Day” from One of Their Own
Medium: Why We Need a Mouse
KSMU: Springfield Mom Works to Raise Awareness after Son Diagnosed with Rare Genetic Disorder
Once Upon A Gene: Episode 116- A Dad’s Fight to Survive Cancer and the Heavy Burdens of Rare Disease with Luke Rosen
Epilepsy Foundation of America: Our Community Celebrates: Caregivers and Other Epilepsy Heroes
Ryan’s Case for Smiles: How to Find Community Support in the Rare Disease Lane
9News: Glenwood Springs Child Suffers From Rare Neurological Disorder Without a Cure or Treatment
Denver7: ‘You Pray That There’s a Treatment That Can Help’: Inside a Colorado Family’s Experience With Rare Disease
Mlive: Michigan Boy Diagnosed With Rare Neurological Disorder That Only Affects 300 People
KSTP News: Parents of Maple Lake Boy With Rare Neurological Disease Raise Awareness in Hopes of Finding a Cure
WRCBtv: 2-Year-Old From Ringgold Lives With Rare Neurodegenerative Disorder
Channel 9 News: Staring into the Unknown: Ringgold Family’s Son Battles Rare Genetic Disorder
Castanet: Rare Disease Needs Attention
CBC News Interview Features Emma’s KIF1A Story
KIF1A.ORG Featured in Ken Burns Documentary, The Gene: An Intimate History
Fox 43 News: Local KAND Superhero Featured for Rare Disease Day 2021
WSBA Morning News Features KIF1A.ORG for Rare Disease Day 2021
Coriell: Rare Disease Advocacy Groups: Forces for Hope
KIF1A.ORG Featured in RARE HUMANS Documentary
USA TODAY: Children with Rare Genetic Disease Find Comfort in this First-Ever Meeting
The Wall Street Journal: On the Way to a Rare-Disease Cure, Parents Tackle the High Price Tag of Research
The Mighty: The Day I chose Vulnerability When Asking for Help to Save the Lives of our ‘Rare’ Kids
CTV News Calgary: Families of Children with Rare Disorders Hope for Further Research
12news.com: Valley 6-Month-Old Suffering from Rare Neurological Disorder
TV6: Family Asks for Help to Find Treatment for Daughter’s Rare Genetic Disorder
Kvalls Posten: Föräldrarnas oro för sjuka Eleonora
