| The Role of Genetics in Rare Pediatric Conditions: What Parents Need to Know |
April 18 2024 |
/patients/center-for-rare-childhood-disorders/stories/the-role-of-genetics-in-rare-pediatric-conditions-what-parents-need-to-know/ |
| Emotional and Mental Well-Being for Parents of Children With Rare and Undiagnosed Conditions |
March 18 2024 |
/patients/center-for-rare-childhood-disorders/stories/emotional-and-mental-well-being-for-parents-of-children-with-rare-and-undiagnosed-conditions/ |
| 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/ |
