Return to Home Page
HOME
RESEARCH
JOIN THE PAF
FAMILY STORIES
DISCUSSION LIST
FAQ
HOW CAN I HELP?
BOARD &
MEDICAL ADVISORS
SITES OF INTEREST
EVENTS
CHAT
TRANSLATE OUR SITE
DISCLAIMER
©PAFoundation.com
Join the PAF Community

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.

If you would like to be part of the Family Directory, please download and fill out the Family Directory form, sign it, and mail to PAF or email it to paf@pafoundation.com   (please note, you must also complete the on-line registration form)

Please complete the required fields * and press submit.
 
* First & Last Name:
* Address:
* City:
* State:
* Postal Code:
* Country:
* Email:
Home Phone:
Work Phone:
Cell Phone:

 
* 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:

Affected: Child Adult
First & Last Name of Affected Individual:
Living, Date of birth:
Age at Diagnosis:
Deceased, Date of Death:
Was diagnosis made after death? Yes No
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 - please explain:
What is/has been your child's treatment plan (i.e. medications, previous surgical interventions, special services such as physicial therapy)?
Do you have other children? Yes No
Name:

Age: Affected? Yes No Pending
Name: Age: Affected? Yes No Pending
Name: Age: Affected? Yes No Pending
Name: Age: Affected? Yes No Pending
 
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.
Yes No
 

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.

Yes No
 
I am interested in participating in research studies focused on improving treatment options and understanding the genetic make-up of Propionic Acidemia.
Yes No
 
I give PAF permission to publish submitted photographs and personal stories on the web site and printed materials
Yes No