SRF Communications Survey

Question Title

* How are you connected to scleroderma?

I am a scleroderma patient

I am a caregiver for a scleroderma patient

I am a parent of a juvenile scleroderma patient

I have a friend/family member with scleroderma

I am a researcher

I am a rheumatologist or clinician

I work in the pharmaceutical industry

Other (please specify)

Question Title

* How did you first learn about the Scleroderma Research Foundation?

Search (via Google, Yahoo, etc)

Another scleroderma organization

News article

Social media

An event

Doctor’s office

A scleroderma patient

A caregiver, friend, or family member of someone with scleroderma

Someone else in the scleroderma community

Other (please specify)

Question Title

* The SRF is active on the following platforms. Which ones do you currently follow or pay attention to? (Select all that apply)

Facebook

Instagram

X (Twitter)

YouTube

TikTok

Threads

I don’t use social media

Question Title

* We’re not currently on the platforms below. Would you like to see the SRF on any of them? (Select all that apply)

Medium

Bluesky

I don’t wish to see the SRF on any additional platforms.

Other (please specify)

Question Title

* Where do you see the most active conversations or communities about scleroderma online?

Question Title

* Which new channels would you be interested in us exploring? (Select all that apply)

Mobile app with push notifications

Text message updates

Podcast

Other (please specify)

Question Title

* Do you receive emails from the SRF?

Yes

Question Title

* How often do you want to hear from us via email?

Twice a week

Weekly

Twice a month

Monthly

Quarterly

I don’t want email

Question Title

* Do you currently receive our eNews newsletter (via email)?

Yes

Not sure

Question Title

* If yes, what do you think of the length of our newsletter?

Too long

Just right

Not enough

Other (please specify)

Question Title

* What types of updates and information are you most interested in receiving from the SRF? (Select all that apply)

Research updates

Clinical trial opportunities

Research participation opportunities

New treatments

Tips for managing the day-to-day of scleroderma

Stories from others living with scleroderma

Events and webinars

Fundraising updates and campaigns

New resources (e.g. toolkits, web pages, videos)

Ways to get involved (e.g. advisory boards, volunteering)

Other (please specify)

Question Title

* Which scleroderma-related complications are you most interested in learning about? (Select all that apply)

Pulmonary Arterial Hypertension (PAH)

Interstitial Lung Disease (ILD)

Pulmonary Fibrosis (PF)

GI complications

Digital ulcers

Heart complications

Kidney issues

Talengiectasia

Other (please specify)

Question Title

* How do you prefer to donate to the SRF? (Select all that apply)

Make an annual gift online or by check

Participate in fundraising events

Make a planned gift through my estate

Make a workplace/payroll deduction gift

Make a memorial or tribute gift

Give through my donor-advised fund

Make a recurring gift

Give to specific campaigns/matching gift challenges

Give to others' Facebook fundraisers (or other online platforms)

Create my own Facebook fundraiser (or other online platform)

I'm not able to donate/not interested in donating financially

Question Title

* Have you ever donated funds to the SRF?

Yes

I prefer not to answer

Question Title

* When we send out fundraising appeals, how does the ability to have your gift matched dollar-for-dollar influence your decision to donate?

It inspires me to donate when I hadn't planned to

It inspires me to donate more money than I normally would

It makes me want to donate less money

It has no impact on my giving decision

Question Title

* Anything else you’d like to share?

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* As a thank you for your time, we’re hosting a drawing for a swag bag! Would you like to enter?

Yes