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

Grad School

Any tips for managing grad school with rare disease? I suffer from neuromuscular disease and it affects basically every part of my body. I will be studying data analysis....

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...

Does anyone have olgilvie syndrome?

Does anyone have olgilvie syndrome and what did Dr say prognosis was? This is very rare from what we were told....

How far do you travel for medical care?

In your diagnosis or treatment journey, how far do you have to go to see doctors and specialists you feel can help you? Have you ever moved to access better...

undiagnosed with normal blood work

These are my symptoms and I just wonder if anyone else has the same thing and has been diagnosed with something where medicine or therapy has helped. My symptoms are...

What does advocacy mean to you?

Advocacy can take many different forms - raising awareness in your local community, sharing on social media, and taking legislative action are just a few examples. Are you involved or...

Workplace Experiences

Has your rare disease impacted you in the workplace? What kind of experiences (positive or negative) have you had with disclosing to managers or coworkers?...

Madelung's

I am helping a friend in Gulf Breeze, Florida (next to Pensacola) who is suffering from benign symmetric lipomatosis (Madelung’s disease) He does not use the internet. His neck and...

Red rash in my mounth

I have red "rash" or something in her mounth for more then 2 months. What do you think this is?...

Hypoglobulimia

Just wondering how many others have this, mine was med induced....

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