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Kyeev, A bit of a lag since my last writing here in August! I was listed at Duke in October and got my transplant 12 days later. So far its...

I always knew that I would want a transplant. That being said, I I've spent most of my life working very hard to prevent one! But the writing was...

I am in Maryland at the Gaylord hotel and the world Orphan Drug Congress. Actually, I am staying at my first Airbnb. So much less expensive and...

The "PCDF Connect" and "PCD Family Support Group" pages on Facebook have members with kids who have PCD and also members who themselves have it....

We are at 1186! Very close to the close of this amazing survey! I am bringing all of you to Maryland this week to the World Orphan Disease Drug...

The 1175th participant was from Utah! We are ending the survey at 1200...so the 1200th participant will receive a $50.00 gift certificate. Then I...

Ethan, Symdeko has definitely helped with chest tightness for me, and I think it's helped with exercise tolerance as well. I switched from Orkambi...

I'm looking to switch from Orkambi to Symdeko at my next clinic appointment in May. Hoping for results like Stephen and Penny had. I've been on...

I am Chris and I am a late diagnosis male of 62 living in Leeds in the UK. In 1957 I had what we then called Asian Flu as it was thought to have...

Good Thread... I don't know why Imogene doesn't incorporate this type info into the profiles and permit you to display it, IF you wanted to. I'm...

A public gym can be nice.

My daughter was diagnosed with FQ at 9 weeks, still waiting for the hospital tests and I am very distressed

Salut, il ne faut pas perdre l'espoir car même si la grossesse n'est pas possible naturellement, la médecine propose des solutions alternatives comma...