Survey for People Who Care About Supporting Those With 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.
Be A Wonder Foundation (
Do you personally know someone affected by rare disease?
If yes, what rare diseases do you have friends/families fighting?
Bone Marrow Failure Syndrome
GI Rare Disease
Metabolic Rare Disease
Blood Rare Disease
Rare Endocrine Disease
Rare Cardiovascular Disease
Rare Pulmonology Disease
Rare Musculoskeletal Disease
Please write the specific rare disease (if known):
Select the areas that you think Be A Wonder should support (where are the gaps with 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
Major financial support (mortgage relief, car payment, scholarships)
Modest financial support (meals, gift certificates, hospital parking)
Supportive treats / care packages for caregivers
Provide resources to physician offices / hospitals about rare disease
Educate physicians / hospitals how to best support families battling rare disease
Please share any other ideas for how the Be A Wonder Foundation can support the Rare Disease community:
Please enter your email address if you would like to help with the foundation
If you would like to help with the foundation, please briefly describe how you would like to help, if known:
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