TGen's Center for Rare Childhood Disorders, C4RCDTM Research Program, is giving hope to children and their families where once there was none. 

Navigating the Holidays as a Caregiver
Navigating the Holidays as a Caregiver

The holiday season can be a magical, joyous time of the year. But the holidays can also overwhelm some people. Here are a few tips to help you manage the holiday season and enjoy it!


Thursday, November 17, 2022
Finding Your New Normal When Your Child Has an Undiagnosed or Rare Condition
Finding Your New Normal When Your Child Has an Undiagnosed or Rare Condition

It’s important to remember there’s no “right” or “wrong” way to respond. Instead, give yourself time to process the news, and be kind to yourself as you adjust to your new situation.


Thursday, September 08, 2022
Dealing With Isolation as a Parent Raising a Child With an Undiagnosed or Rare Condition
Dealing With Isolation as a Parent Raising a Child With an Undiagnosed or Rare Condition

Raising a child with an undiagnosed or rare disease takes a lot of emotional energy, but you're not alone. As a parent of a child with an undiagnosed or rare disease, you know how isolating it can be. You may feel alone and not know who to turn to in your time of need. But, it's important to remember that you’re not alone, and some people understand what you're going through.


Wednesday, August 10, 2022
How to Talk with Family and Friends About Your Child's Rare or Undiagnosed Condition

Thursday, June 30, 2022
Taking a Break: It's Essential for Parents of Children Who Have Rare and Undiagnosed Conditions
Taking a Break: It's Essential for Parents of Children Who Have Rare and Undiagnosed Conditions

Navigating parenthood is a challenge for every parent. In addition to the standard twists and turns of parenting, parents caring for a child or children with a rare or undiagnosed condition face a minefield of uncertainty.


Monday, May 02, 2022
Parenting Siblings of a Child with a Rare or Undiagnosed Condition
Parenting Siblings of a Child with a Rare or Undiagnosed Condition

Here are 5 ways to help support your other children


Thursday, April 07, 2022
How to Talk With Your Child About Their Rare or Undiagnosed Condition
How to Talk With Your Child About Their Rare or Undiagnosed Condition

Helping your child understand their condition, especially when it affects their ability to engage in childhood activities, can be overwhelming. Here are a few tips to help.


Wednesday, March 23, 2022
Rare Childhood Conditions: 3 Tips to Survive the Long Road to Diagnosis
Rare Childhood Conditions: 3 Tips to Survive the Long Road to Diagnosis

It’s almost impossible to imagine anything more frightening, upsetting, or frustrating than knowing your child is sick and no one knows why. Unfortunately, all you have are symptoms—no definitive explanation for what they mean. No name or label is attached to what’s making your child ill. Your child has a rare or undiagnosed condition.


Thursday, February 03, 2022
Raising a Child with a Rare or Undiagnosed Condition
Raising a Child with a Rare or Undiagnosed Condition

All children need the same things to grow and thrive—love, safety and security, a healthy environment, and opportunities. However, if you’re raising a child with a rare or undiagnosed condition, you and your child will most likely have additional needs or encounter situations that other families don’t.


Friday, December 17, 2021
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