Forums

Read conversations, start a discussion, and connect with others about rare diseases.

Active today

Want to get help after being diagnosed with a rare disease

Unfortunately, my friend's child had a Nr2f1 gene mutation, which triggered Bbsoas. Do you have any medical intervention and treatment suggestions? All...

Active yesterday

Welcome! Let's Get to Know Each Other.

We are glad you are here! Please introduce yourself and let us know which rare disease impacts your or your loved one's...

Active 4 days ago

Taking a weekly Shot.

I have Giant Cell Atries. Been taking a weekly Shot of Actemra Actpen. My Med Insurance will no longer cover the cost...

Active 4 days ago

High red cells and tired constantly.

I have morphea and a spinal malformation, constantly sore points underneath each morphea patch, muscle spasms, tiredness and watery vision. I have...

Active 8 days ago

What are some of the biggest accessibility challenges you face in your daily life due to your rare disease?

Accessibility is a crucial part of living with a rare disease, and your experiences can be varied yet also relatable. Consider sharing...

Medical mystery (6+ years)

I am at a loss. This has been an ongoing and progressively worsening problem for approximately six years, and it has affected...

how have y'all been coping with fear, insomnia, due to being in remission?

I was diagnosed with nsclc and subsequently found out I have myasthenia gravis as well. The meds they give me for the...

45 years diagnosed Scleroderma

Because outwardly I appear to be fine most people just f fr o not understand how you can look ok but be...

People do not understand that fatigue is different from exhaustion.

Struggling to find a doctor to help

On January 12, 2025, I was diagnosed with something called Eagle Syndrome. That is the easy name for it. Basically, there's a...

Categories

Select a category to find topics that interest you.