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

Antibiotics experience: Azithromycyn, Ethambutol and Refampin

A member is interested in feedback from the community from anyone who has taken any of the above antibiotics with some degree of success. Do you or someone you know...

what are some tips for managing rar disease?

Early Diagnosis: First and foremost, it's crucial to get a proper diagnosis as early as possible. Due to the rarity of the disease, it might take longer than usual. Consulting...

Holidays with a Rare Disease

The holidays can be exciting but also come with many challenges for those with rare diseases. What special considerations do you have to take into account during this time of...

West Nile Virus

Long term walking difficulty. Walk very slowly with a cane....

CIDP (Chronic Inflammatory Demyelinating Polyneuritis)

I was an RN but didn't know about this disease. I would love to hear from people who have it, what kind of treatment they get, a little pathophysiology, and...

SMS

Does anyone on here have Smith-Magenis syndrome or have family members with it?...

How has living with a rare disease impacted you?

Those living with a rare disease are often the experts on their disease. To better understand the patient experience and realities of rare diseases, we are fielding our first Rare...

What could workplaces do to foster a more disability-inclusive culture?

What ideas do you have for employers to create a more supportive work environment for people with visible or invisible disabilities?...

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