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

Dermatomyositis

I don’t know anybody else who has dermatomyositis. It is hard wearing all the stuff I need to in order to keep...

What life lessons or advice is important to pass on to children and young adults living with a rare disease?

What can parents and caregivers do to help set their children up for success as they grow up? What has been helpful...

Pola1 gene variation

Hello, I would like to connect with a family who has a child with POLA 1 gene variation, specifically Van Esch-O'Driscoll Syndrome...

METHEMOGLOBINEMIA: AN UNCOMMON HEMOGLOBIN DISORDER"

METHEMOGLOBINEMIA DEFINITION Methemoglobinemia is a blood disorder where an unusual quantity of methemoglobin is generated. Methemoglobin is a formation of hemoglobin in...

Do you allow your child with a rare disease to go on overnight school field trips?

If so, what tips have worked for you and your child? How did you prepare your child and yourself for this experience?...

Colonoscopy to rule out Mast Cell Activation Syndrome...

What exactly are they trying to find out from the results of Colonoscopy?...

How to Be a Great Friend to Someone Living With a Rare Disease

What characteristics, behaviors, and kindnesses mean the most to you from people who are not living with a rare disease?...

Sheehans

Does anyone have this besides me?...

Symptoms of Eye Vision Damage?

Eye vision damage can present with a variety of symptoms, depending on the underlying cause and severity. Common signs include blurred or...

Recognizing the Symptoms of Eye Conditions

Understanding the symptoms of various eye conditions can help in early detection and treatment, preserving vision and eye health. Common symptoms such...

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