EURORDIS Member Organisations Survey "Group 1"

Part One: Getting Involved

You may already be aware that we are currently undertaking a strategic review of Rare Disease Day in preperation for the next 10 years.

As part of our review, it's important that we hear from our members. We would like to know from you/your organisation to gain a better understanding on your current thoughts about the day and to provide insights on how you foresee Rare Disease Day’s growth for the future. To help us, please fill out this survey and note that all responses will be kept anonymous.

Thank you in advance

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* 1. In one word, what does Rare Disease Day mean to you?

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* 2. How much are the below audiences important for Rare Disease Day for you? (Prioritise 1 – 5, with 1 being the most important and 5 of lesser importance.)

	1	2	3	4	5
General Public	General Public 1	General Public 2	General Public 3	General Public 4	General Public 5
Policymakers and politicians	Policymakers and politicians 1	Policymakers and politicians 2	Policymakers and politicians 3	Policymakers and politicians 4	Policymakers and politicians 5
Patients	Patients 1	Patients 2	Patients 3	Patients 4	Patients 5
Patients and Families affected by rare disease	Patients and Families affected by rare disease 1	Patients and Families affected by rare disease 2	Patients and Families affected by rare disease 3	Patients and Families affected by rare disease 4	Patients and Families affected by rare disease 5
Pharmaceutical companies	Pharmaceutical companies 1	Pharmaceutical companies 2	Pharmaceutical companies 3	Pharmaceutical companies 4	Pharmaceutical companies 5

Other (please specify)

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* 3. What activities have you supported in the past around Rare Disease Day? Choose as many as are applicable.

Public relations

Advertising

Events

Social media

Committee / lobbying

None of the above

Other (please specify)

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* 4. How important is fundraising as a component of your participation in Rare Disease Day activity?

Very important

Important

Somewhat important

Not very important

Not at all important

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* 5. Can you share an example of an activity that worked well on a past Rare Disease Day? Please tell us why you think it worked.

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* 6. What are the challenges in getting people involved locally? Choose as many as are applicable.

Lack of time

Lack of clear call to action

No relation to Rare Disease Day

Lack of understanding of the day

None of the above

Other (please specify)