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Phone number

Please check at least one of the categories that applies to you:
I am the parent/caregiver of a child diagnosed with Propionic Acidemia **See below registration**I am an affected individual with Propionic Acidemia **See below registration**Sono un amico interessato o un parente di un individuo con l'acidemia propionica,,en,Sono un amico interessato o un parente di un individuo con l'acidemia propionica,,en,Sono un amico interessato o un parente di un individuo con l'acidemia propionica,,en,Sono un amico interessato o un parente di un individuo con l'acidemia propionica,,enI am a physician/medical providerI am a journalist

Comments & Miscellaneous
Comments or Questions

How did you learn about our Foundation
—Per favore, scegli un'opzione—Search engineMedical StaffParent
Please check where applicable:
Sarei interessato a ricevere informazioni sulle attività della Fondazione in futuro.
I would like a Foundation representative to contact me personally.
I would like to receive email updates.
** PARENTS OF DIAGNOSED CHILDREN OR
DIAGNOSED INDIVIDUALS ONLY **
Medical Background:
First & Last Name of Affected Individual
Date of birth
Age at Diagnosis
Deceased, Date of Death
Was diagnosis made after death? yesno
Diagnosed and followed by (doctor/medical center)
Is there a family history of Propionic Acidemia? If so, please state relation and age of diagnosis
Are there any other secondary diagnosis? Example: Cardiomiopatia, Neutropenia, Allergies

What is/has been your child's treatment plan (i.e. medications, sugeries, servizi come la terapia fisica)?

Do you have other children?YesNo
Name/Age
AffectedYesNo

Nome
AffectedYesNo

Nome
AffectedYesNo

Nome
AffectedYesNo

Release Authorization:

Please check "Yes" to authorize release of your information for communication and research purposes only. This section is required to be filled out if you have completed the medical background section.

I would like to be listed in the PAF's mailing list and family directory. Information that will be distributed to other families include general contact information such as name, address, e-mail, numero di telefono, names and age of children and whether affected or not. By agreeing to be listed, I am willing to let another parent with a diagnosed child contact me for support.
YesNo
I give PAF permission to share the submitted medical background information in a non-personal, aggregated format with interested medical professionals and scientific researchers for analysis and research purposes only.
YesNo
I am interested in participating in research studies focused on improving treatment options and understanding the genetic make-up of Propionic Acidemia.
YesNo
I give PAF permission to publish submitted photographs and personal stories on the web site and printed materials
YesNo

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