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

Active yesterday

Seeking others with Houge-Janssens Syndrome

Hello. My son received a diagnosis of Houge-Janssens Syndrome type 3. It is caused by a mutation in the gene designated PPP2CA...

Active 5 days ago

Stange constellation of symptoms - anyone had a similar experience and found a diagnosis or effective treatment?

Hello, I've been struggling for years now with massive changes in my body, and I'm really worried for my health, as I...

Undiagnosed: chest tightness and pressure in head

For the last 3 years my male partner of 8 years, who appears perfectly healthy, has been plagued by unexplained symptoms that...

APLAID

I’m a patient of the NIH. I don’t believe there is anyone else out there with this disease besides my daughter and...

CMT type 4c1, hEDS, PsA, Fibro, Ichthyosis

I wish Drs wouldn't laugh off multiple diseases. Even a dna test didn't help. " only thier clinical opinion matters, not a...

MSL2 syndrome

Hi everyone, at first sorry for my english I didn't write for a long time and I live now in Germany. Our...

diagnosis

what are some tips with managing fap syndrome...

1 year later, no diagnosis

Mom looking for support...It's been a little over a year since all this started. 2 hospital stays each 1 week long. First...

Leg movement

2 years ago I started to develop a disorder in both my legs. Can't move properly. I'm 55 Can't run at all...

Recently been diagnosed

With dermatomyositis, unfortunately I've been suffering now from it for almost 4 years. I have athrophy my thinking space isn't what it...

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