Rare Disease on The Mighty

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."

20/11/2024

If you or your child is living with hypophosphatasia (HPP) — a rare, inherited condition that makes it difficult for the body to create strong bones and teeth — it can feel isolating and near impossible to manage.

Click the link to learn more about this rare condition, including a potential new investigational medication that may help children and adults living with HPP better manage the disease.

by Alexion’s HPP Program

If you or your child is living with hypophosphatasia (HPP) — a rare, inherited condition that makes it

18/11/2024

"If you’re navigating life with a rare disease and feel that those around you don’t fully understand, remember that your loved ones care deeply and want to support you. Sometimes, understanding what it’s truly like to live with PBC takes time."

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.

23/10/2024

"Unfortunately, so many with these types of disorders are often left undiagnosed until a major medical event happens, as they are typically multisystemic resulting in many elusive symptoms that don’t point to an obvious diagnosis."

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

02/10/2024

Finding information about a rare disease like Primary Biliary Cholangitis (PBC) can be challenging. You may have a lot of questions. Learn more about how to get the most out of appointments with your health care provider.

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.

24/09/2024

Scheduling, organizing, and checking things off our to-do list with a limited amount of energy and symptoms like brain fog and/or fatigue (to name a few), can be tricky. Sometimes it's helpful to write a quick reminder to ourselves to make sure we don't forget something!

For today's , jot down a quick reminder to yourself about something you don't want to forget this week. ✍️

Join our conversation and let us know what yours is in the “Take a Mighty Minute” group: https://themighty.com/u/takeamightyminute/content/66f2adca92828837730c1463/

11/09/2024

"Living with a rare disease can be lonely."

* orders one immediately *

10/09/2024

To support those living and caring for people with health conditions, symbols and colors are worn proudly throughout the year. Some even tattoo themselves to serve as a constant reminder of their health journey – how they persevered and found hope.

"Even though all my conditions are rare, I know I'm not alone in my fight for treatment, research and a cure."

20/08/2024

Primary Biliary Cholangitis (PBC) is a chronic autoimmune condition that affects the bile ducts in your liver.

If you or a loved one has recently been diagnosed with PBC, it’s normal to feel overwhelmed. To help navigate this journey, we’ve gathered some important insights about living with PBC.

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.

29/07/2024

Primary biliary cholangitis (PBC), a chronic autoimmune disease that affects the liver, has no current cure — but there is still hope. Explore the available treatments for PBC, ways to lessen the severity of symptoms, and suggestions to improve your quality of life.

Ah, the liver. It’s an organ that tends to get overlooked in terms of how crucial its functionality is to our bodies (hint: it does a lot more than process alcohol). So

17/07/2024

In this episode of The Mighty Podcast, Donna shares her experience living with a rare, chronic blood cancer. From symptom management to advocating to get a treatment option that works best for her, listen in to learn about Donna’s journey and how she manages to live with the condition today.

Listen on Spotify: https://open.spotify.com/episode/5iP0iTOiqoHwIl3YF58HwI?si=wHKLFgTOQJKjvEisphg_hg

by Incyte

03/07/2024

"At 24 years old, you became not just a husband, but a caretaker."

02/07/2024

"But you know what would be a tragedy? If I lost any of them."

02/07/2024

And let’s be clear — friendships also have their ups and downs. We can accept that depression may be a lifelong pal while also doing everything we can to keep its influence from overwhelming us.

We have a collection of Mighty stories by people who've been in your shoes: https://themighty.com/topic/depression/collections/collection/62d9b2ba7f8eb7002b3f06b4/

01/07/2024

Spinal muscular atrophy (SMA) is a rare neuromuscular condition that disrupts the signals from the brain to the muscles, leading to muscle weakness. Whether you're living with SMA, caring for someone who is, or simply seeking to learn more, having access to reliable information and resources is essential.

That’s why The Mighty has created a comprehensive guide that covers everything from diagnosis and treatment options to personal stories and community support.

Check out The Mighty’s SMA Condition Guide for in-depth insights and helpful resources.

For this Spinal Muscular Atrophy (SMA) condition guide, we talked with an SMA expert, read the latest studies, and connected with SMA advocates and caregivers of children living with SMA.