Externally-Led Patient Focused Drug Development Meeting for Krabbe disease
Thursday, October 29th, 2020 from 12:30-4:30 pm EST
Please join us for a once in a life-time opportunity to come together to help #curekrabbe. KrabbeConnect initiated an Externally-Led Patient Focused Drug Development (EL-PFDD) meeting for the Krabbe disease community. This meeting, coordinated and facilitated by the National Organization for Rare Disorders, will be conducted virtually on Thursday, October 29th, 2020 from 12:30-4:30 pm EST.
What is the purpose of the EL-PFDD meeting?
As therapeutic developments move forward for Krabbe disease, our community needs to ensure that researchers, drug developers, and the Food and Drug Administration (FDA) have a robust understanding of patients’ and caregivers’ experiences with the disease. Including but not limited to, how individuals with Krabbe disease view their quality of life (with transplant and without), what aspects of the disease are most problematic for them, and what actions patients’ and caregivers’ utilize to treat and cope with this disease.
What are the Fiscal Sponsor Opportunities?
KrabbeConnect is partnering with NORD on this very important initiative. NORD has vast experience facilitating and conducting these unique PFDD meetings. KrabbeConnect encourages all stakeholders to connect with Amelia Moore, Vice President of Development and Marketing at NORD, for sponsorship opportunities at amoore@rarediseases.org. All sponsors will receive the following:
Who can participate in the EL-PFDD meeting?
Anyone impacted by the disease and those working diligently to improve the outcomes for those diagnosed with this rare neurological disease are encouraged to participate. KrabbeConnect is only one voice. It’s vital that all of the following stakeholders participate:
- Patients and Caregivers
- The Legacy of Angels Foundation
- Partners for Krabbe Research
- Hunter’s Hope Foundation
- United Leukodystrophy Foundation
- Krabbe UK
- Pharmaceutical Companies
- Researchers and Clinicians
How can stakeholders participate?
Be a Speaker
We need patients, caregivers, clinicians, and industry to be a part of the agenda. We encourage all willing stakeholders to speak. It’s an opportunity to have your voice heard by the FDA and others! See link below to apply today
Speaker Interest Form: https://www.tfaforms.com/4809550
Deadline to apply: Friday, August 7th, 2020
Selection Process: NORD PFDD committee will be selecting individuals to speak and be a part of the agenda. NORD will notify selected speakers by the end of August. Should you have any questions or concerns, please connect with Alexa Moore at amoore@rarediseases.org
Be an Attendee
We encourage all stakeholders the opportunity to be part of the PFDD meeting. Attendees’ perspectives will be captured through disease-specific polling questions utilized throughout the meeting. Please apply today!
Attendee Registration Form: https://rarediseases.org/event/krabbe-disease-externally-led-patient-focused-drug-development-meeting/
Deadline to Apply: Thursday, October 29th, 2020
Current Fiscal Sponsors
