ABOUT THE PATIENT
Support Request Form
We are so glad you are requesting support for your family. Please fill out this questionaire and one of our Care Team managers will be contacting you shortly. (NOTE: Some of our questions are required in order to capture data for grant funding.)
Patient Name
*
First Name
Last Name
Age of Patient
*
In Years
Patient Birthday
*
Has your child been diagnosed with Hypophosphatasia? by whom?
*
IS your child diagnosed with anything in addition to HPP? Please list.
In brief, tell us the patient's story.
When was diagnosis? Are there any special circumstances? Is anyone else diagnosed?
Has the patient already started treatment? If so, when was their first injection?
*
If known, please tell us how many injections are done each treatment session.
1 injection
2 injections
3 injections
How often is the Strensiq dosage going to be, or is currently administered?
6 times per week
3 times per week
If known, what type of needles are being used?
Insulin Needle
Other Type
I'm Not Sure
If CURRENTLY receiving the injections, please indicate the level of discomfort TYPICALLY experienced
1
2
3
4
5
6
7
8
9
10
no pain
severe pain
1 is no pain, 10 is severe pain
Please indicate how YOUR CHILD is feeling about diagnosis and treatment:
1
2
3
4
5
6
7
8
9
10
calm
severely stress
1 is calm, 10 is severely stress
IF your child has ALREADY STARTED INJECTIONS, are they exhibiting any of the following symptoms THAT THEY DID NOT HAVE BEFORE TREATMENT: (check all that apply. Your accuracy that this is a NEW issue is critical.)
concerning changes in behavior
regression (acting younger than they are)
disorientation
increased anxiety/ fear
needle phobia
increased physical pain
sadness, depression
other signs of resistance
Please indicate how YOU are feeling about diagnosis and treatment:
*
1
2
3
4
5
6
7
8
9
10
calm
severely stress
1 is calm, 10 is severely stress
Please share any other relevant information about the patient regarding treatment.
What kind of incentive/support do you think would have the greatest IMPACT for your child?
What is something the patient aspires to be or do? (BIG GOAL)
FAMILY INFORMATION
This section is designed to help us offer support and encouragement for the WHOLE family! We know that if everyone is showing positive support and feels important, your household will be stronger and more successful on this treatment path.
Please list ALL members of the family living in the home, including relation/name/age. (Example: Brother, Nick, Age 9):
*
Is anyone else in the household also diagnosed with HPP? Are they receiving treatment?
*
We understand this time is a stressful time for your family. Please list some self-care/wellness-related activities that you and your family currently do.
Does the family have any spiritual or religious affiliations that would be beneficial to know?
LOGISTICS
The following questions helps our team identify support needs for the patient & family.
Have you already been connected with your OneSource worker or support specialist?
*
Yes
No
Do you have private insurance or Medicaid?
*
What is the name of your insurance company? (we collect this information so that we are able to help research what additional services or supplies your insurance can order for you.)
PERMISSIONS
Do we have your permission to share photos and videos on social media, our website and marketing materials representing the work that The Avalon Foundation does?
*
More specifically, what do you feel comfortable with us sharing on social media?
*
Your story without your names
Your story with names
photos
all of the above
None of the above
Do we have your permission to email you regarding updates or communication from our organization?
*
Yes
No
Please provide PATIENT'S email address if you would like them added to our patient newsletter list.
example@example.com
PATIENT'S Phone Number (please provide if you would like our peer support team to reach out via text)
-
Area Code
Phone Number
Would you be interested in joining a Facebook group we have for families of The Avalon Foundation? If so, please give us your Facebook Name & expect a friend request from one of our team members.
Facebook Name
Comments
RESOURCES
How did you hear about The Avalon Foundation?
*
Alexion/ One Source written material
Alexion/ One Source caseworker
NORD
Facebook
Instagram
other patient family
Soft Bones representatives
patient support group
MAGIC
Online search
Article
Other source
What other sources of support are you using?
*
Soft Bones
NORD
Global Genes
mental health professional (Life Specialist, counselor, psychologist)
support group
none
CONTACT INFORMATION
YOUR Name
*
First Name
Last Name
Your relationship to the patient
*
YOUR phone number
*
-
Area Code
Phone Number
YOUR email address
*
example@example.com
Best time to reach you?
Address
*
Street Address
Street Address Line 2
City
State / Province
Postal / Zip Code
Your child’s shirt size:
*
Please verify that you are human
*
Thank you for your request!
We appreciate the opportunity to help your family on this journey. You should hear from one of our team members within 2-5 days.
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