Center for Rare Childhood Disorders

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Center for Rare Childhood Disorders

Where Answers Make a World of Difference

Answers within the genetic code

By harnessing the power of the human genome to understand rare disorders that have life-altering effects that often go unanswered, the Center delivers results that matter.

A family of genomes

Nearly two-thirds of all rare diseases are inherited. In our search for answers, Center faculty and staff sequence each patient's genome and the genomes of their immediate family to help pinpoint the cause.

A connection to all humankind

While each of our genomes are unique, the information we learn from every sequence adds to a growing body of knowledge that could help future patients faced with a similar disease or disorder.

Every Genome Tells a Story

Our genes shape who we are in so many distinct and different ways. So, too, do they play more than a passing role in how we develop and react to disease, and as important, how our body reacts to treatment. At the Center, our faculty are pioneers in deciphering the story a person’s genome has to tell. They have the ability to decipher a patient's genome and provide information to the physician —and families— about how best to attack a given disease.

Our Care Doesn't Stop at The Doctor's Office
Our

At TGen we're connected to something so much deeper...our DNA.

Diagnostic Rate

Cold Cases

Support Groups

Clinical Trials

How

Kade's Story

For Kade, answers were five years in coming. His story is one of perseverance and how TGen — working side-by-side with the families — continues to redefine the term rare as it applies to childhood diseases and disorders and showcases how your support truly makes a difference for those in search of hope. While the journey continues, and the challenges persist, knowing has made all the difference in the world.

What our Patients Say

We can tell you the science behind our clinic, but what really matters is the impact we make in our patients' (and their families') lives.

“After years of searching for answers for our two children’s medical problems, TGen’s Center for Rare Childhood Disorders gave us a diagnosis. TGen didn’t stop there and is actively using the latest genomic technology to find treatments for our children. TGen has given us hope!”

Newell Belnap

“With the help of TGen, we now know Lily's diagnosis. I can't tell you how grateful we are!”

Marilynn Niemann

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RESOURCES

View our collection of stories and discoveries about our science

What is Whole Genomic Sequencing (WGS) and how does it work? Read our latest post about the 9 important things you should know about WGS and how it is helping us treat our patients.

Where Answers Make a World of Difference

By donating to TGen's Center for Rare Childhood Disorders, you can help make a difference in the lives of children with rare and devastating diseases. With your support in TGen’s work, we can continue providing answers and improving the lives of children for generations to come.

Give Now

Make an Impact

Your Gift Directly Supports our Research to Help Children

Help Our Researchers Provide Answers and Improve Lives

Donor Contact

445 N. Fifth St. Phoenix, AZ 85004
1.866.370.8436
[email protected]

Virtual Tours

Explore TGen and The Center for Rare Childhood Disorders from the comforts of your own home!

Blog

Read our latest posts about how we’re able to identify rare disorders and offering hope for families.

Patient Contact

Interested in becoming a TGen patient? Contact The Center's co-director, Keri Ramsey.

Clinical Trials

If your child is affected by a rare disease or disorder, they may be eligible to participate in a clinical trial in the effort to determine future potential treatments.

Enroll Here

Children and young adults with a disease or condition whose genetic cause(s) are unknown may be eligible for our rare disease study.

Tuberous Sclerosis Complex

We are seeking families where the parent has a mild form of the disease and the child has a severe neurological disease.

Make An Impact

Please consider making a donation today. Your gift directly supports our researchers and physicians in their effort to help children with unknown diseases and disorders.

Events

Our Center relies on philanthropy to provide genetic testing at no cost to the family. Join in one of these fun fundraising events to Support Our Science.

Vinodh Narayanan

Vinodh Narayanan

Clinical Professor and Medical Director

Center for Rare Childhood Disorders

Matt Huentelman

Matt Huentelman

Professor

Neurogenomics Division

Sampathkumar Rangasamy

Sampathkumar Rangasamy

Research Associate Professor

Neurogenomics

Keri Ramsey

Clinicial Co-Director

Center for Rare Childhood Disorders

Meredith Sanchez-Castillo

Meredith Sanchez-Castillo

Clinical Research Coordinator

Center for Rare Childhood Disorders

Clinical Research Coordinator

Center for Rare Childhood Disorders