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Rare Disease on The Mighty

Real People. Real Stories About Rare Disease On The Mighty. To share your story with us, send it to [email protected] for editorial consideration.

The Mighty is a site where people share their personal experiences with disability, disease and mental illness. To share a video with us, send it to [email protected]. All other questions, email [email protected] to get in touch with a member of our Mighty team. Thank you for being a part of our community!

26/09/2025

💜 Rett syndrome is a rare neurological disorder that mostly affects girls, causing challenges with movement, communication, and daily life. Though rare, its impact is profound — and families affected by Rett often face a long and difficult diagnostic journey.

By sharing knowledge and raising awareness, we can bring visibility, support, and hope to those living with Rett syndrome and their loved ones. 🌸

👉 Learn more and join the conversation: [Insert Link]

Rett syndrome is a rare genetic neurological disorder that affects the way the brain develops, and causes severe impairments. It is a progressive dise

15/09/2025

✨ 9 “Invisible” Symptoms of ✨
Not every challenge can be seen — but they deeply affect daily life.

🟣 Learn more about these hidden symptoms and how they impact individuals & families

Less visible symptoms of Rett syndrome include anxiety, inappropriate laughing, cold hands and feet and more.

03/09/2025

What to expect from treatments for growth hormone deficiency.

https://themighty.com/topic/growth-hormone-deficiency/understanding-growth-hormone-therapy-for-your-child/

Helping your child navigate a chronic health condition can be challenging, both physically and emotionally. For some families, this journey involves a diagnosis of

12/08/2025

When she was a toddler, her words began to fade, her hands stopped working the way they once had, and walking became harder. The diagnosis was Rett syndrome — a rare neurological disorder that affects speech, motor skills, and coordination.

Today, Emma uses eye-tracking technology to communicate, works hard in therapy, and fills her days with music, laughter, and the love of her family. 💜

Her journey is a reminder: every small victory matters.

💬 Do you know someone living with Rett syndrome? Share their story below.

You'll find a community that has your back on The Mighty, no matter what health situation you're going through. We talk about what health is really like — mental health, chronic illness, disability, rare disease, cancer, and much more.

11/08/2025

💛 Meet Tanner 💛

At just 10 years old, Tanner plays the trombone, loves animals, and dreams of becoming a stage set designer. But behind his smile is a journey of strength.

Tanner has Alagille syndrome, a rare genetic disease that caused years of intense, constant itching.

His story is a reminder of the power of resilience. 💛

by Ipsen

To the casual observer, Tanner seems like most other 10-year-old kids. He loves spending time with his family, playing the trombone, and reading. He’s competitive, funny, and full of energy. If you me

29/07/2025

“I want others with rare diseases to know that limitations don’t have to stop you from chasing your dreams.” — Whitney, living with fibrodysplasia ossificans progressiva (FOP)

Her story reminds us all: no matter the challenge, there is strength in embracing your journey. Read more here.

by Ipsen Biopharmaceuticals, Inc.

For people living with a chronic condition, rare disease, or disability—or all three—

03/07/2025

Growth hormone deficiency in kids isn't just about being shorter. It can impact muscles, heart health, and more. Learn the signs to catch it early! 💪❤️

28/06/2025

"Rare diseases and diagnoses need societal clarity to be properly acknowledged and achieve advancements."

"So many of these types of disorders are left undiagnosed until a major medical event happens."

25/06/2025

"There are times when the doctor you see isn’t the right fit. It’s OK to seek out a second or even third opinion to make sure you are getting what you need."

Managing a chronic condition can be overwhelming, especially in the beginning. There is so much to learn and manage, alongside just not feeling like your “normal” self.

09/04/2025

Kids with Growth Hormone Deficiency (GHD) face more than just growth challenges—it can impact self-esteem & emotional well-being too. 💙 Support, advocacy & open conversations make a big difference.

Helping your child navigate a chronic health condition like

01/02/2025

Did you know that pediatric growth hormone deficiency (pGHD) is a rare condition that can impact more than just a child’s height? It can also affect overall well-being.

If you notice signs of slow growth or other concerns, talk to your child's doctor.

Spread awareness and support families navigating GHD!

Does your child seem to tire quickly or grow slower than other children their age? While growth patterns can vary, some children

04/12/2024

Here's what it's like to work as a certified patient advocate.

"These two wildly different experiences showed me that the way in which a diagnosis is delivered matters greatly."

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