Hear Their Stories

TGen's Center for Rare Childhood Disorders, C4RCD TM Research Program, is giving hope to children and their families where once there was none.

Glossary of Medical Terms: Decoding the Language of Rare and Undiagnosed Conditions February 20 2024 /patients/center-for-rare-childhood-disorders/stories/glossary-of-medical-terms-decoding-the-language-of-rare-and-undiagnosed-conditions/
Rare Disease Day: Why Awareness Matters and How You Can Participate January 22 2024 /patients/center-for-rare-childhood-disorders/stories/rare-disease-day-why-awareness-matters-and-how-you-can-participate/
Living Day-to-Day: Tips for Managing Your Child’s Undiagnosed or Rare Condition December 20 2023 /patients/center-for-rare-childhood-disorders/stories/living-day-to-day-tips-for-managing-your-child-s-undiagnosed-or-rare-condition/
The Role of Therapy: Addressing Mental and Emotional Needs of Children with Rare Diseases November 28 2023 /patients/center-for-rare-childhood-disorders/stories/the-role-of-therapy-addressing-mental-and-emotional-needs-of-children-with-rare-diseases/
Transitioning to Adulthood: When Your Child with a Rare or Undiagnosed Condition Grows Up October 12 2023 /patients/center-for-rare-childhood-disorders/stories/transitioning-to-adulthood-when-your-child-with-a-rare-or-undiagnosed-condition-grows-up/
Navigating Insurance and Medical Costs for Children with Rare or Undiagnosed Conditions September 22 2023 /patients/center-for-rare-childhood-disorders/stories/navigating-insurance-and-medical-costs-for-children-with-rare-or-undiagnosed-conditions/
Study Links Inherited Mutations to Okur-Chung Neurodevelopmental Syndrome August 17 2023 /patients/center-for-rare-childhood-disorders/stories/study-links-inherited-mutations-to-okur-chung-neurodevelopmental-syndrome/
Financial Planning for Families With a Child With a Rare or Undiagnosed Condition August 17 2023 /patients/center-for-rare-childhood-disorders/stories/financial-planning-for-families-with-a-child-with-a-rare-or-undiagnosed-condition/
How Patient Registries Advance Research on Rare and Undiagnosed Diseases July 20 2023 /patients/center-for-rare-childhood-disorders/stories/how-patient-registries-advance-research-on-rare-and-undiagnosed-diseases/
Tips to Navigate School and Social Life for Children with Rare or Undiagnosed Conditions July 14 2023 /patients/center-for-rare-childhood-disorders/stories/tips-to-navigate-school-and-social-life-for-children-with-rare-or-undiagnosed-conditions/
Sharing Your Child's Rare Disease Story to Make a Difference June 08 2023 /patients/center-for-rare-childhood-disorders/stories/sharing-your-childs-rare-disease-story-to-make-a-difference/
Rare Disease Parenting: How to Advocate for Your Child in the Healthcare System May 11 2023 /patients/center-for-rare-childhood-disorders/stories/rare-disease-parenting-how-to-advocate-for-your-child-in-the-healthcare-system/
Tips To Find Strength When Your Child Has a Rare or Undiagnosed Condition March 31 2023 /patients/center-for-rare-childhood-disorders/stories/tips-to-find-strength-when-your-child-has-a-rare-or-undiagnosed-condition/
The Realities of Life With a Child With a Rare or Undiagnosed Condition March 02 2023 /patients/center-for-rare-childhood-disorders/stories/the-realities-of-life-with-a-child-with-a-rare-or-undiagnosed-condition/
How To Help Your Child Cope With a Rare or Undiagnosed Condition January 27 2023 /patients/center-for-rare-childhood-disorders/stories/how-to-help-your-child-cope-with-a-rare-or-undiagnosed-condition/
Involving Your Child in the Decision-Making Process January 13 2023 /patients/center-for-rare-childhood-disorders/stories/involving-your-child-in-the-decision-making-process/
Navigating the Holidays as a Caregiver November 17 2022 /patients/center-for-rare-childhood-disorders/stories/navigating-the-holidays-as-a-caregiver/
Waiting for a Diagnosis When Your Child Has a Rare Condition October 20 2022 /patients/center-for-rare-childhood-disorders/stories/waiting-for-a-diagnosis-when-your-child-has-a-rare-condition/
Finding Your New Normal When Your Child Has an Undiagnosed or Rare Condition September 08 2022 /patients/center-for-rare-childhood-disorders/stories/finding-your-new-normal-when-your-child-has-an-undiagnosed-or-rare-condition/
Dealing With Isolation as a Parent Raising a Child With an Undiagnosed or Rare Condition August 10 2022 /patients/center-for-rare-childhood-disorders/stories/dealing-with-isolation-as-a-parent-raising-a-child-with-an-undiagnosed-or-rare-condition/
How to Talk with Family and Friends About Your Child's Rare or Undiagnosed Condition June 30 2022 /patients/center-for-rare-childhood-disorders/stories/how-to-talk-with-family-and-friends-about-your-childs-rare-or-undiagnosed-condition/
Taking a Break: It's Essential for Parents of Children Who Have Rare and Undiagnosed Conditions May 02 2022 /patients/center-for-rare-childhood-disorders/stories/taking-a-break-its-essential-for-parents-of-children-who-have-rare-and-undiagnosed-conditions/
Parenting Siblings of a Child with a Rare or Undiagnosed Condition April 07 2022 /patients/center-for-rare-childhood-disorders/stories/parenting-siblings-of-a-child-with-a-rare-or-undiagnosed-condition/
How to Talk With Your Child About Their Rare or Undiagnosed Condition March 23 2022 /patients/center-for-rare-childhood-disorders/stories/how-to-talk-with-your-child-about-their-rare-or-undiagnosed-condition/
Rare Childhood Conditions: 3 Tips to Survive the Long Road to Diagnosis February 03 2022 /patients/center-for-rare-childhood-disorders/stories/rare-childhood-conditions-3-tips-to-survive-the-long-road-to-diagnosis/
Raising a Child with a Rare or Undiagnosed Condition December 17 2021 /patients/center-for-rare-childhood-disorders/stories/raising-a-child-with-a-rare-or-undiagnosed-condition/
Connecting with Peers: Powerful Support for "Rare Parents" November 12 2021 /patients/center-for-rare-childhood-disorders/stories/connecting-with-peers-powerful-support-for-rare-parents/
Episode 42: An Inside Look at the World of Rare Disease Research October 27 2021 /patients/center-for-rare-childhood-disorders/stories/episode-42-an-inside-look-at-the-world-of-rare-disease-research/
Does Your Child Have an Undiagnosed Disorder? Consider Doing These 5 Things October 21 2021 /patients/center-for-rare-childhood-disorders/stories/does-your-child-have-an-undiagnosed-disorder-consider-doing-these-5-things/
Resources for Parents of Children with Rare Conditions September 23 2021 /patients/center-for-rare-childhood-disorders/stories/resources-for-parents-of-children-with-rare-conditions/
Self Care for Caregivers of Children with Rare Childhood Conditions September 17 2021 /patients/center-for-rare-childhood-disorders/stories/self-care-for-caregivers-of-children-with-rare-childhood-conditions/
5 Things to Know if You Have a Child with a Rare or Undiagnosed Condition August 09 2021 /patients/center-for-rare-childhood-disorders/stories/5-things-to-know-if-you-have-a-child-with-a-rare-or-undiagnosed-condition/
Finding Treatments, Finding Hope July 06 2021 /patients/center-for-rare-childhood-disorders/stories/finding-treatments-finding-hope/
9 Things to Know About Whole Genome Sequencing May 01 2021 /patients/center-for-rare-childhood-disorders/stories/9-things-to-know-about-whole-genome-sequencing/
When Cold Case Reviews Reveal New Information April 29 2021 /patients/center-for-rare-childhood-disorders/stories/when-cold-case-reviews-reveal-new-information/
Providing Hope for Arizona Families April 14 2021 /patients/center-for-rare-childhood-disorders/stories/providing-hope-for-arizona-families/
Identifying Rare Childhood Disorders Through Genomics April 01 2021 /patients/center-for-rare-childhood-disorders/stories/identifying-rare-childhood-disorders-through-genomics/
Episode 35: Diagnosing Rare Disorders February 23 2021 /patients/center-for-rare-childhood-disorders/stories/episode-35-diagnosing-rare-disorders/
Tuberous Sclerosis Complex January 01 2021 /patients/center-for-rare-childhood-disorders/stories/tuberous-sclerosis-complex/
TGen-USC Researchers Link Sisters' Paralysis to an 'Extremely Rare' Genetic Variant November 14 2019 /patients/center-for-rare-childhood-disorders/stories/tgen-usc-researchers-link-sisters-paralysis-to-an-extremely-rare-genetic-variant/
TGen Team Links Gene to Children with Physical and Intellectual Disabilities August 15 2019 /patients/center-for-rare-childhood-disorders/stories/tgen-team-links-gene-to-children-with-physical-and-intellectual-disabilities/
TGen-led Study Shows Mutated Gene is Likely Cause of 3-Year-Old Girl's Severe Disorder July 23 2018 /patients/center-for-rare-childhood-disorders/stories/tgen-led-study-shows-mutated-gene-is-likely-cause-of-3-year-old-girls-severe-disorder/
TGen's 'Medical Miracle' — Now Wheelchair-Free — Celebrates 13th Birthday August 07 2013 /patients/center-for-rare-childhood-disorders/stories/tgens-medical-miracle-now-wheelchair-free-celebrates-13th-birthday/