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Johanna - our daughter with bilateral PFFD

Hi! Johanna is now 5 years old. She has bilateral PFFD, also complicated by a foot which turns outwards and no right hand. Johanna is not walking. We are very keen to hear from any and every other children or adults with bilateral PFFD. We have lots of questions about treatments, what we can expect etc.
Please get in touch!


Hi, Angela! I am an adult with bpffd, and I'd love to talk with you about my experiences with this condition. Feel free to contact me through here, or you can email me (

Hi my name is Brandy. I have a daughter with bilateral pffd she will be one this sunday! I know you won't be able to learn anything new from me about what's to come but my hope is that we can share our feelings about this with ech other as I have not been able to get into contact with many other bilateral cases. hope to hear from you soon.


Hi Angela, reading about Johanna was interesting as it sounds very similar to my case. I'm 29 and I have bilateral pffd and was born with no arm from the elbow on my left side. Feel free to write to me

Dave Bailey