What Are Rare Genetic Disorders?
Rare genetic disorders are conditions caused by changes or mutations in a person’s DNA. These disorders often affect fewer than 200,000 people in the United States, which makes them unfamiliar to most — but life-altering for those who live with them. They can impact growth, development, metabolism, and countless other aspects of health from birth through adulthood.
One example is Growth Hormone Deficiency (GHD) — a condition where the body doesn’t produce enough growth hormone, a key factor in helping children grow taller, stronger, and healthier. For kids with GHD and other rare disorders, early diagnosis and access to treatment can change the entire course of their lives.
Why Is This Important?
When rare conditions go unnoticed or untreated, children can fall behind physically, emotionally, and socially. The lack of awareness often means families feel isolated, confused, or overwhelmed as they try to find answers. Treatments like growth hormone therapy exist — but not every child can afford them.
That’s why spreading knowledge and offering support matters. By raising awareness and providing financial help for treatments, we give children with rare genetic disorders the chance to live full, confident lives — and grow into who they were always meant to be.
Signs of Growth Hormone Deficiency
Growth Hormone Deficiency can look different from child to child, but common signs often include:
Slower growth compared to peers (less than 2 inches per year after age 3)
Short stature despite normal weight
Younger appearance than their actual age
Delayed puberty or underdeveloped facial features
Increased body fat, especially around the waist
Low energy or decreased stamina
**If a child is showing any of these signs, it’s important to consult a pediatrician or endocrinologist. With proper testing and treatment, children with GHD can thrive — physically, emotionally, and socially.
How TeensTogether Can Help
At TeensTogether, we are dedicated to helping children and teens with Growth Hormone Deficiency (GHD) and rare genetic disorders access the treatment they need to thrive. Here's how we make a difference:
Funding Treatment: We raise money to help cover the cost of life-changing therapies like growth hormone injections and genetic testing for families who can’t afford them.
Raising Awareness: Many people have never heard of GHD or the impact of rare disorders. We work to change that through education, advocacy, and community outreach.
Partnering with Providers: We collaborate with pediatricians, endocrinologists, and hospitals to identify children in need and ensure funds go directly where they’re needed most.
Empowering Families: Navigating a rare diagnosis is overwhelming. We provide resources, encouragement, and support so families never have to face it alone.
With your help, TeensTogether can give every child the chance to grow with confidence — physically, emotionally, and fearlessly.