CDKL5 Patient-Focused Drug Development

Join Us in Beautiful College Park!

IFCR has partnered with Loulou Foundation to sponsor a CDKL5 Deficiency patient-focused drug development meeting (PFDD) with the FDA.

When? November 1, 2019.

Where? College Park Marriott Hotel & Conference Center, Hyattsville, Maryland, from 1:30 p.m. to 5:00 p.m.

Why? The purpose of this meeting is for individuals affected by CDKL5 Deficiency and their caregivers to communicate their perspectives on living with CDKL5 Deficiency to drug development stakeholders and the FDA. This feedback will help them with drug development an appropriate clinical trial design for future CDKL5 trials. This meeting is free and open to the public, and you can participate from home via live webcast.

CDKL5 Panelist Application:
Speakers will have a travel stipend for up to 3 people (yourself, child, caretaker). We will provide you with details upon acceptance to speak.

Informational Webinar:

Hotel Booking: College Park Marriott Hotel & Conference Center for $169.00 USD per night. Last day to book at this rate is 10/3/19. Book now at this link.

Join us for this once in a lifetime meeting to share YOUR experiences living with CDKL5 Deficiency with drug development stakeholders and the Food and Drug Administration (FDA). We need your help so please register below to receive up-to-date information and future announcements regarding meeting details.