[ivie] ten people with RP needed for study

[Ardis Bazyn]

Hello All,

I have been asked to forward the announcement below in hopes that there are ten members of ACB who are willing and able to assist a company seeking to learn
more about the perspectives and needs of people who have RP.  If you might be such a person, please read on.

Thanks.

Melanie

Campbell Alliance is a consulting firm that specializes in the biotech and pharmaceutical industry. They are working with a pharmaceutical company that
is currently developing a potential treatment for Retinitis Pigmentosa (RP), and would like to gain a deeper understanding of RP from the perspectives
of patients. Through these perspectives, they can understand how to better educate patients and caregivers about RP. They would like to conduct a 45-to-60
minute telephone discussion with interested RP patients in order to capture their perspectives on living with RP. Specifically, how has RP changed your
life?  What were your experiences with being diagnosed with RP?  How do you manage and address RP in your life, and where do you go for more

information on the disease?  For their time and insights, participants will receive a $100 honorarium.

This research is being conducted through August 19th and this study will be closed after the next 10 eligible patients respond. To qualify as a participant
in this study, please contact Dr. Mary Lee (mlee at campbellalliance.com) with your responses to the below six questions:

. Have you been formally diagnosed with Retinitis Pigmentosa by a physician?

. Is your Retinitis Pigmentosa associated with any syndrome (such as Usher's or Bardet-Biedl)?

. Are you willing to speak about your experiences being diagnosed with RP, your day-to-day experiences living with RP, and where you go for more information
on RP?

. Are you fluent in English?

. What city, state, and country do you live in?

. If you live in the US, are you willing to complete a W9 form (required by the IRS; we will not share your personal information with anyone) in order to
receive your $100 honorarium?

Melanie Brunson, Esq.

Executive Director

American Council of the Blind

2200 Wilson Boulevard, Suite 650

Arlington, VA 22201

202-467-5081

mbrunson at acb.org
http://www.acb.org

Ardis Bazyn
For inspirational speaking, business coaching, writing, or books: www.bazyncommunications.com
newsletter: http://www.bazyncommunications.com/newsletter.php
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