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

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 distorted vision, which may make it difficult to...

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 as blurred vision, eye pain, redness, floaters, and...

Looking for rare disease advocates for a podcast.

I have a podcast called Rare Connection. I am trying to connect rare disease patients with others with the same or similar conditions with it, educate medical professionals and the...

Looking for board members for a nonprofit

I have a podcast called rare connection, I am trying to turn it into a nonprofit. With my podcast I am connecting people with the same or similar conditions, educating...

Can anolder person get into a clinical trial

SILENT STRUGGLES: UNDERSTANDING EATING DISORDERS"

Eating disorders is an acute and serious psychological health stipulation that is noticeable by deleterious eating manners, which can seriously and crucially impact physical health and spiritual or psychological or...

Amyotrophic Dermatomyositis

Anyone taking injection methotrexate for this?...

From Parkinson’s to Progressive Supranuclear Palsy

10/2020 diagnosed with one disease, 12/2023 P.S.P. I was told that this new disease diagnosis was so much worse. My fate was sealed. Following the direction of my Movement Disorder...

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