Calling Patients with Rare Diseases/Parents of Children with Rare Diseases

We at Putting 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.

https://www.surveymonkey.com/r/XP6P5C6

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.

Do visit us on Facebook and visit us on our social media sites shown below.

Lorna Speid, Ph.D.

Founder and President of the Board

Putting Rare Diseases Patients First!®

PRDPF! Website: www.puttingrarediseasespatientsfirst.org

PRDPF! Facebook page: https://www.facebook.com/PuttingRareDiseasesPatientsFirst

PRDPF! Twitter: https://www.twitter.com/PuttingRDPF

Join our Linkedin Group: https://www.linkedin.com/groups/7053055

PRDPF! Blog: https://rarediseases123.wordpress.com/

Support PRDPF! by shopping at Smile.Amazon.com https://smile.amazon.com/ch/32-0430223

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s