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 (beawonder.org)

Do you personally know someone affected by rare disease? *

Yes

If yes, what rare diseases do you have friends/families 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 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

Other:

Required

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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