FDA Public Neuropathy Meeting: An Invitation

Today's post from foundationforpn.org (see link below) is a chance for you all to have your say about neuropathy at a meeting sponsored by the FDA itself. As you probably know, the American FDA (Food and Drug Administration) is probably the most influential official medical body in the world and has control over which drugs you may eventually be prescribed and why. You can physically attend (see details and address below) but more importantly for visitors to this blog, you can attend digitally (via a live webcast), which means that your voice from wherever in the world, can be heard. This sort of opportunity is pretty rare but one you should maybe consider. Neuropathy patient statistics across the world are astronomical, so every chance we get to provide some input will both help raise awareness and be an interesting learning experience too. Give it a try. What have you got to lose?

A Chance to be Heard!: Public Meeting on Pain Associated with Peripheral Neuropathy sponsored by U.S. Food and Drug Administration (FDA) 
April 10, 2016

The Food and Drug Administration (FDA invites you (patients, caregivers and family members) to an upcoming public meeting on neuropathic pain associated with peripheral neuropathy to be held on June 10, 2016 from 1pm-5pm (EDT) at the FDA Campus in Silver Spring, Maryland (or you may attend virtually!). Specific details are outlined below.

The purpose of the meeting is to gather patients’ perspectives on symptoms and daily impacts that matter most to them, and to discuss available approaches for treating neuropathic pain associated with peripheral neuropathy.

This meeting is an exciting opportunity for patients to bring their voice to FDA and the drug development process.

You may participate in person OR through a live webcast. FDA needs your help to make this meeting a success. Please follow the links below to register, explore the discussion questions and meeting format, and find more information on FDA’s Patient-Focused-Drug Development initiative.

Registration: https://peripheralneuropathypfdd.eventbrite.com
Meeting website: http://www.fda.gov/ForIndustry/UserFees/PrescriptionDrugUserFee/ucm490866.htm

If you are attending in person, below you will find an attachment with a list of hotels near the FDA campus and a map to help you find your way around.

The meeting format maximizes patient participation. For each discussion topic, a small panel of patients or caretakers will provide brief comments to start the dialogue. The panel comments will be followed by a facilitated discussion with other patients and patient representatives in the audience. Patients or caregivers who would like to be considered to be on the opening panel can indicate that as part of registration. They will be asked to send a short summary of their responses to the discussion questions (posted on their registration site) to PatientFocused@fda.hhs.gov.

This is an exciting opportunity to share your experiences living with PN. If you have any questions, please feel free to contact them at PatientFocused@fda.hhs.gov. 

FPN Patient Survey

Even if you can’t participate in the meeting yourself, there is another way to make your voice heard! Pam Shlemon, Executive Director for the Foundation for Peripheral Neuropathy will be attending the meeting in person. We would like to send her with current information from patients like you about what it is like to live with peripheral neuropathy. Please complete a very brief survey sharing your experiences and she will present this information at the meeting.

 Click here to complete the survey. 

Hotels, Campus Map and FDA announcement:

Hotels by the FDA White Oak Campus

White Oak Campus map

Official Flyer/Announcement from the FDA

https://www.foundationforpn.org/2016/04/10/5176/