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Family Education and Support Services Registration Form

Family Education and Support Services provide education and peer support to help families affected by Fanconi anemia (FA). Educational materials include the following publications: FA Family Newsletter, Fanconi Anemia: Guidelines for Diagnosis & Management, FA Courier, FA Testing & Treatment Resource Guide and other publications. The Fund also holds an annual Family Meeting, Meetings for Adults with FA, moderates a restricted-membership E-group for FA families and a support group on Facebook.

The Family Information form allows us to have current contact information for you, and to maintain follow-up. Your privacy is important to us. You will always be asked for your permission to publish your family information in the annual International Family Directory, and before referring other FA families to you.

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:

Gender:                    

Date of Diagnosis:

Transfusions?                      

Transfusion Frequency:

Transplanted?                    

Transplant Date:

Where transplanted:

Transplant Donor Related?                    

Source: (check one)                              

Degree of Match:

FA Gene Complementation Group:

FA Gene:                    

Diagnosis of solid mass tumor:                    

Tumor Location (oral, vulva, etc.)

HPV Vaccination?                    

HPV Vaccination Date:

Myelodysplastic Syndrome?                    

Myelodysplastic Syndrome Date:

Leukemia?                    

Leukemia Date:

FA Characteristics, such as short stature, anomalies of the thumb or arm, skeletal anomalies, kidney anomalies or problems, skin discolorization, developmental disabilities, low birth weight or failure to thrive, gastrointestinal difficulties, or other characteristics:
         

Medications currently in use:
         

FA Child/Adult Information for Child 2:

Name:

Date of Birth:

Ethnicity:

Gender:                    

Date of Diagnosis:

Transfusions?                      

Transfusion Frequency:

Transplanted?                    

Transplant Date:

Where transplanted:

Transplant Donor Related?                    

Source: (check one)
                             

Degree of Match:

FA Gene Complementation Group:

FA Gene:                    

Diagnosis of solid mass tumor:                    

Tumor Location (oral, vulva, etc.)

HPV Vaccination?                    

HPV Vaccination Date:

Myelodysplastic Syndrome?                    

Myelodysplastic Syndrome Date:

Leukemia?                    

Leukemia Date:

FA Characteristics, such as short stature, anomalies of the thumb or arm, skeletal anomalies, kidney anomalies or problems, skin discolorization, developmental disabilities, low birth weight or failure to thrive, gastrointestinal difficulties, or 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:
     
     
     

I/we would like to be placed on the mailing list (for newsletters and meeting announcements):
           

I/we would prefer to receive newsletters electronically:
           

I/We would like to be included in the next (2016) annual FA International Family Directory:
           
(To be included in the Family Directory, please complete this form.)

I have an FA blog, website, or public Facebook page that I'd like to share with other families:

  • In the Family Directory:            
  • Linked from FARF's website (to the FA Family Pages):            

Please indicate your blog/website/Facebook page address:      

I/we would like to join the private Facebook family support group (restricted to adult patients and parents only):
           

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

of note

Despite a rare, incurable disease, Amy Frohnmayer Winn ran joyfully through life learn more...

Register now for the 2017 FA Symposium! learn more...

We are pleased to welcome Mark Quinlan to the FARF team as Executive Director learn more...

Five Fanconi Anemia Projects Funded in Last Year Thanks to Knight Family learn more...