Virtual Webinar for the XLRP Community, 22 April 2022

You Are Invited to Attend a Virtual Webinar for the X-linked Retinitis Pigmentosa (XLRP) Community on Friday, April 22nd from 3:00-4:00 PM Eastern Time

The purpose of this webinar is to provide details about an upcoming Externally-Led Patient Focused Drug Development (EL-PFDD) meeting for XLRP, and to provide background information about the Food and Drug Administration’s (FDA) drug review process.

 

The EL-PFDD meeting will be held virtually on June 7th, 2022 from 10:00 AM to 3:00 PM Eastern Time. The goal of the June 7th meeting is to educate FDA staff and other key stakeholders such as biotech and pharmaceutical companies about what it is like to live with XLRP, with perspectives from both affected individuals as well as caregivers and family members of affected individuals. The FDA staff can use this information when reviewing new clinical trials or new drug applications for XLRP.

 

EL-PFDD meetings are unique among public meetings with the FDA and other stakeholders, with a format designed to engage patients and elicit their perspectives on two topic areas:

(1) the most significant symptoms of their condition and the impact of the condition on daily life; and

(2) current approaches to management or treatment.

 

Please join us on April 22nd to learn about this important meeting for our community, and how you can be involved.  Your input is an invaluable resource to ensuring that this meeting is successful, and we would appreciate as many people in attendance as possible.

 

We look forward to meeting with you!

 

Please use the link below to join us on April 22 from 3:00-4:00 Eastern Time:

 

Join Zoom Meeting

https://fightingblindness-org.zoom.us/j/83664508695?pwd=M2NGMitMeWhDcm5jSTFGbmdMbE4rZz09

 

Meeting ID: 836 6450 8695

Passcode: 073353

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Meeting ID: 836 6450 8695

Find your local number: https://fightingblindness-org.zoom.us/u/krTinZnm5

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