Patient-Focused Drug Development (PFDD) Meeting on FSGS
An exciting initiative by NKF and NephCure to inform the FDA about the patient perspective of living with focal segmental glomerulosclerosis (FSGS).
Due to the COVID-19 pandemic and to protect the health of our FSGS patients, this will be a virtual meeting.
Anyone who lives with or is interested in FSGS - patients of all ages, care-partners, families and friends - are welcomed to attend.
Each person (e.g., child, spouse, etc.) must register separately.
Watch this page for updates during week of August 24:
- You'll be able to submit comments on your experience with FSGS before the meeting
- The link to join the meeting will be available August 27th
Take the patient survey
To prepare for the upcoming meeting on FSGS, we need your input on how FSGS affects your life.
Your response will help us make the best meeting possible.
All information you provide in the survey will be kept strictly confidential.
Who benefits from EL-PFDD meetings?
Food and Drug Administration (FDA)
Patient advocacy groups
Hear from Previous Patient and FDA Participants
Being able to tell my story, be heard, and people empathizing and understanding the struggles this disease faces you with is indescribable.
I think that your stories really highlight the urgency with which we need to find effective treatments for this disease, and also treatments that have better safety profiles than those that are currently out there.
I liked that everyone was invited to speak freely and participate. It was an excellent opportunity to tell our stories.
I can say with certainty…that the stories that you shared with us today, your experiences with the disease will certainly impact how we at FDA will think about this disease, will approach our discussions with sponsors moving forward, and will really shape the development in the future of therapies for this disease.
What do you do with the information from the Patient Survey?
Is there a charge to attend the meeting?
How do I register to attend the EL-PFDD meeting?
EACH PERSON (e.g., CHILD, SPOUSE, ETC.) MUST REGISTER SEPARATELY.
When and for how long is the EL-PFDD Meeting on FSGS?
Can pediatric patients attend the EL-PFDD Meeting on FSGS?
What happens after the meeting?
The oldest and largest non-profit health organization dedicated to preventing kidney diseases and improving the health and well-being of individuals and families affected by kidney disease.
The only organization committed exclusively to accelerate research for effective treatments for rare forms of Nephrotic/Nephritic Syndrome, and to provide education and support that will improve the lives of those affected by these protein-spilling kidney diseases.