We atPutting Rare Diseases Patients First!®are calling all who fall into these categories to take our survey. We are seeking to hear from those with rare diseases so that we can serve them better and marshal the support needed.
If you fall into either of these two categories, or if you are a rare disease patient advocate, we would like you to take our carefully constructed Survey by clicking on the following Link, or copying the link into a new browser.
If you are an advocate, the survey will simply ask for your contact information so that we can keep in touch. If you are a patient with a rare disease, or a parent of a child with a rare disease, ensure you tick these options so that you can be taken to the rest of the survey.
We need to test or pilot the survey to 100 patients/parents/advocates as quickly as possible. After this initial pilot the survey will be sent to 1000 patients/parents/advocates using social media, and email. We will then analyze the results and publish our findings.
Why are we conducting this survey? We plan to use the current focus on healthcare to bring appropriate attention to the needs of patients with rare diseases. If you are involved in the rare disease space, I hope you will want to get involved in this initiative. The survey takes about 15 minutes max to complete.
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Putting Rare Diseases Patients First!® is a 501 (c) (3) non profit charity. We do not charge patients with rare diseases for the services we provide. Please consider donating to help us to provide these services. Any amount is welcomed, but suggestions are $5, $10, $20 and $50.