Girl who battled rare disease will live on through parents' awareness ...

Tori Brackbill passed away on Easter Sunday after a battle with a rare disorder.Brackbill, close to two years old, captured the hearts of ...

Six-Year-Old Girl's Heartbreaking Question to Parents Amid Cancer ...

Velikaneye hopes their battle will raise awareness of rare childhood cancers. "If you have a feeling something is wrong, then it is ...

The Reality of Living with a Rare Disease: Emily's Ongoing Battle

Rare Disease Day is an opportunity to raise awareness about the impact these diseases can have on the lives of those who are living with ...

Portrait of 6-year-old girl living with rare disease unveiled at ...

Her mother Jaime began pursuing genetic testing in 2020 to learn if her daughter's diagnoses were somehow connected. Brielle was diagnosed with ...

Lakeville girl battles rare disease as parents raise thousands for a cure

Ten-month-old Lucy Hieb has a genetic disease called CTNNB1 Syndrome that only impacts about 400 people worldwide.

To help his daughter living with an ultra-rare disorder, this dad ...

The Broadbent family worked closely with scientists to discover the unique genetic cause of their daughter's disease, highlighting the need ...

Family pushes for awareness, funding on 'Rare Disease Day'

The family of two little girls with a rare, fatal disorder are pushing for funding for research on upcoming 'Rare Disease Day'

Twin Cities family raises awareness about 2-year-old daughter's ...

Earlier this year, Teegan Olson was diagnosed with an MEF2C mutation, a genetic disorder so rare only about 350 people are known to have it ...

Genetic Detectives Diagnose Child With Ultra-Rare Disorder

For years, her parents struggled to obtain an accurate genetic ... Emma Broadbent is the first person diagnosed with a rare genetic disorder ...

Infant with rare disease celebrates 1st birthday: 'She brings harmony ...

“She has a disease ...

Oxford mum urges people to join research into rare diseases - BBC

Lucy's 12-year-old daughter Bea has autoinflammatory disease Muckle-Wells syndrome.

FAMILY OF GIRL WITH RARE... - Missouri House Communications

FAMILY OF GIRL WITH RARE CONDITION URGES HOUSE TO 'BELIEVE IN GIANNA,' HELP RAISE AWARENESS OF SANFILIPPO SYNDROME The family of a little ...

A Mother's Dream to Rise Above – Cristina Vargas – Batten Disease...

At the age of five, her remarkable son Juju was diagnosed with CLN2 Batten disease. She is committed to making a difference in the lives of those impacted by ...

Olivia's Story in Honor of Rare Disease Day

We have discovered that she has severe learning disabilities, but there isn't enough data to be certain it is because of the disorder. Living life in the ...

'It Will Consume Your Life': 4 Families Take On Rare Diseases

When frantic parents of children with other rare disorders ask how she did it and what they can do, Ms. Coenraads recognizes the fear in their ...

Girl With Rare Disease Who Inspired State Law Dies

A 1-year-old girl whose battle with a rare disease inspired the passing of a Pennsylvania State Law died Sunday morning. Her heartbroken parents ...

Valley girl with rare disease helps raise money for other sick children

A Valley family struggled for answers as their daughter battled the unknown. Now, they're among those helping raise money for children ...

Two families, united by a rare disease, push for awareness and a cure

Two girls in Virginia have the same rare genetic disease. Their families have bonded over their shared challenges and determination to help ...

Olivia's Story in Honor of Rare Disease Day

We have discovered that she has severe learning disabilities, but there isn't enough data to be certain it is because of the disorder. Living ...

Massachusetts parents host fundraiser to raise awareness for ...

Massachusetts parents host fundraiser to raise awareness for toddler battling rare neurological disease ... SOMERVILLE - Nineteen-month-old Lucas ...