Survey for Families Affected By Rare Diseases
We are starting a new foundation to help support families affected by rare diseases. We are grateful for your input about where there are opportunities to help.
* Required
Be A Wonder Foundation (
beawonder.org
)
How old is/are the family member(s) affected by rare disease?
*
<2
2-5
5-10
10-17
18-30
>30
What rare disease is your family fighting?
*
Primary Immunodeficiency
Bone Marrow Failure Syndrome
GI Rare Disease
Metabolic Rare Disease
Blood Rare Disease
Rare Cancer
Rare Endocrine Disease
Rare Cardiovascular Disease
Rare Pulmonology Disease
Rare Musculoskeletal Disease
Pediatric Cancer
Other:
Required
Please write the specific rare disease (if known):
Your answer
Select the areas that you think Be A Wonder should support (where are the gaps in current support?)
*
Help communicating with health care providers (navigating patient portals, expectations for communication, etc.)
Help finding experts
Accessing and interpreting medical literature
Finding patient/family support networks / groups
Finding clinical trials
Understanding treatment options
Gathering support for events
Creating personalized "merchandise" / "swag" for fundraisers and/or to help gather support from community
Significant financial support (mortgage relief, scholarships, car payments, etc)
Small financial support (meals, gift certificates, hospital parking)
Provide resources to physician offices / hospitals about rare disease
Educate physicians / hospitals how to best support families battling rare disease
Fund research
Other:
Required
Please share any other ideas
Your answer
Please enter your email address if you would like to help with the foundation
Your answer
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