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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)

    Postleitzahl (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**Ich bin ein besorgter Freund oder Verwandter eines Individuums mit Propionazidämie,,en,Ich bin ein besorgter Freund oder Verwandter eines Individuums mit Propionazidämie,,en,Ich bin ein besorgter Freund oder Verwandter eines Individuums mit Propionazidämie,,enI am a physician/medical providerI am a journalist

    Comments & Miscellaneous
    Comments or Questions

    How did you learn about our Foundation

    Please check where applicable:
    Ich würde bei der Aufnahme von Informationen über die Aktivitäten der Stiftung in der Zukunft interessiert sein.
    I would like a Foundation representative to contact me personally.
    Ich möchte E-Mail-Updates erhalten,en.
    ** 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: Kardiomyopathie, Neutropenie, Allergies


    What is/has been your child's treatment plan (i.e. medications, sugeries, Dienstleistungen wie Physiotherapie)?


    Do you have other children?YesKEIN
    Name/Age
    AffectedYesKEIN

    Name
    AffectedYesKEIN

    Name
    AffectedYesKEIN

    Name
    AffectedYesKEIN

    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, Telefonnummer, 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.
    YesKEIN
    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.
    YesKEIN
    I am interested in participating in research studies focused on improving treatment options and understanding the genetic make-up of Propionic Acidemia.
    YesKEIN
    I give PAF permission to publish submitted photographs and personal stories on the web site and printed materials
    YesKEIN

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