Skip to main content

Thank you for your interest in the externally-led Patient-Focused Drug Development (PFDD) Meeting on Barth syndrome!

Barth syndrome (BTHS) affected individuals and their families have a unique opportunity to have their voices heard by the US Food and Drug Administration (FDA) on Wednesday, July 18th, in Clearwater Beach, Florida, from 12:00 - 5:00 PM EDT. The PFDD meeting is designed to educate the Barth Syndrome Foundation researchers and FDA, whose representatives will be present both in-person and via the live webcast, to accelerate the development and approval of life-changing therapies for people affected by BTHS.

Name
Prefix
First Name *
Middle
Last Name *
Suffix
Name of Institution or Affiliation
Current Position or Title
Attending meeting as (check all that apply)
Do you plan on attending in person or remotely
Please check if this is your first PFDD meeting
Dietary Restrictions
(Kosher, vegetarian, allergies, etc.)
Special Needs
(wheelchair accessibility, hearing impaired, etc.)
Name
Prefix
First Name
Middle
Last Name
Suffix
Email
Attending meeting as (check all that apply)
Do you plan on attending in person or remotely
Name
Prefix
First Name
Middle
Last Name
Suffix
Email
Attending meeting as (check all that apply)
Do you plan on attending in person or remotely
Name
Prefix
First Name
Middle
Last Name
Suffix
Email
Attending meeting as (check all that apply)
Do you plan on attending in person or remotely
Name
Prefix
First Name
Middle
Last Name
Suffix
Email
Attending meeting as (check all that apply)
Do you plan on attending in person or remotely
Photo Consent
We will be taking pictures and videos during the conference to include in future newsletters, on our website, and in literature promoting our mission. Do you give consent to use these photos?
Parking
Will you be driving a vehicle to the conference for which parking will be required?
This is intended for hotel information only and not as a guarantee of free parking
Is there anything we didn't ask that we should know about?

Powered by Firespring