CNN+: The human genome has finally been decoded. Here’s why this discovery is a game changer

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

WENY News: Raising Awareness on Rare Disease Day


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

KIF1A Superhero Emma at hospital

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 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