How did you learn of the Fanconi Anemia Research Fund?

** Parent(s) Name(s) (if registering a minor FA patient):
required

Adult FA Patient’s Name (if applicable):

Contact Information:

Address:

Street 1

Street 2

Street 3

City

State

Country

Postal/Zip Code

Home Phone

Cell Phone

** E-mail required

Name of Other Parent not residing with FA Child:

Contact Information for Other Parent:

Address:

Street 1

Street 2

Street 3

City

State

Country

Postal/Zip Code

Home Phone

Cell Phone

E-mail

FA Child/Adult Information for Child 1:

Name:

Date of Birth:

Ethnicity:

Date of Diagnosis:

Transfusions?           Yes            No

Transfusion Frequency:

Transplanted?           Yes           No

Transplant Date:

Where transplanted:

Transplant Donor Related?           Yes           No

Source: (check one)           Bone Marrow           Peripheral Blood           Core Blood

Degree of Match:

FA Gene Complementation Group:

FA Gene:           Tested, but not yet determined           Not tested

Diagnosis of solid mass tumor:           Yes           No

Tumor Location (oral, vulva, etc.)

HPV Vaccination?           Yes           No

HPV Vaccination Date:

FA Characteristics (check all that apply):

          Short stature
          Anomalies of the thumb or arm
          Additional skeletal anomalies
          Kidney anomalies or problems
          Discoloration of the skin or Cafe au lait spots
          Small head or eyes
          Developmental disabilities
          Low birth weight or 'failure to thrive'
          Difficulties of the gastrointestinal tract
          Other characteristics

Medications currently in use:
         

FA Child/Adult Information for Child 2:

Name:

Date of Birth:

Ethnicity:

Date of Diagnosis:

Transfusions?           Yes            No

Transfusion Frequency:

Transplanted?           Yes           No

Transplant Date:

Where transplanted:

Transplant Donor Related?           Yes           No

Source: (check one)
          Bone Marrow           Peripheral Blood           Core Blood

Degree of Match:

FA Gene Complementation Group:

FA Gene:           Tested, but not yet determined           Not tested

Diagnosis of solid mass tumor:           Yes           No

Tumor Location (oral, vulva, etc.)

HPV Vaccination?           Yes           No

HPV Vaccination Date:

FA Characteristics (check all that apply):

          Short stature
          Anomalies of the thumb or arm
          Additional skeletal anomalies
          Kidney anomalies or problems
          Discoloration of the skin or Cafe au lait spots
          Small head or eyes
          Developmental disabilities
          Low birth weight or 'failure to thrive'
          Difficulties of the gastrointestinal tract
          Other characteristics

Medications currently in use:

Unaffected Sibling(s):

Sibling One Name

Sibling One Date of Birth:

Sibling Two Name

Sibling Two Date of Birth:

Sibling Three Name

Sibling Three Date of Birth:

Children (for Adults with FA):

Child One Name

Child One Date of Birth:

Child Two Name

Child Two Date of Birth:

The Fanconi Anemia Research Fund may refer other families to us:
      YES, any time
      YES, if the Fund notifies me first
      NO

I/we would be willing to write an article for the FA Family Newsletter:
      Yes       No

I/we would like to be placed on the mailing list (for newsletters and meeting announcements):
      Yes       No

I/we would prefer to receive newsletters electronically:
      Yes       No

I/We would like to be included in the next (2013) annual FA International Family Directory:
      Yes       No
(I understand that by being included, other families may contact me and that I may contact any of the families listed. I also understand that contact and relevant FA medical information will be listed, including dates of birth of children. I also understand that I will have the opportunity to approve, change, or withdraw my listing each year prior to the publication of the new FA International Family Directory.)

I/we would like to join the online support group (restricted to adult patients and parents only):
      Yes       No

Indicate the e-groups you would like to join:
      General FA Group
      Adult Patient Group

E-mail address to subscribe:

Is there anything else you would like us to know about you or your family?
     

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