Survey for Families Affected By Rare Diseases

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We are building a 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 (beawonder.org)

How old is/are the family member(s) affected by rare disease? *

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):

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

Strategies for combining medical records across hospitals / physicians

Option 15

Other:

Required

Please share any other ideas

Please enter your email address if you would like to help with the foundation

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