Free registration!

Please fill out the below registration form to be part of our growing network of families, friends, and medical professionals.  Your registration will allow you to receive periodic updates about new developments on Propionic Acidemia, additional resources and foundation-related activities.

For more information on confidentiality, please view our privacy policy.

 

Your Name (required)

Address (required)

City (required)

State (required)

Zip Code (required)

Country (required)

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 **
I am a concerned friend or relative of a child affected with Propionic Acidemia.
I am a physician
I am a journalist
Comments & Miscellaneous
Comments or Questions

How did you learn about our Foundation

Please check where applicable:
I would be interested in receiving information about the Foundation's activities in the future.
I would like a Foundation representative to contact me personally.
I would like to join the PAF Online Discussion List.
** 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: Cardiomyopathy, Neutropenia, Allergies


What is/has been your child's treatment plan (i.e. medications, sugeries, special services such as physicial therapy)?


Do you have other children?YesNo
Name/Age
AffectedYesNo

Name
AffectedYesNo

Name
AffectedYesNo

Name
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, email, phone number, 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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