10:00 am - 1:30 pm
6:00 pm - 7:00 pm
To help answer your questions about clinical trials, the Rogosin Institute, a PKD Foundation Center of Excellence, launched the Rogosin Advanced Research Series.
To help answer your questions about clinical trials, the Rogosin Institute, a PKD Foundation Center of Excellence, launched the Rogosin Advanced Research Series. In this first webinar, James Chevalier, M.D., will deep dive into the clinical trial for Vertex’s VX-407.
No registration is required for this webinar, simply click the link below to join.
About Vertex VX-407 (The “Protein Fixer”):
How it works: Think of your kidney cells like a factory that needs a specific instruction manual to produce polycystin proteins, which keep the kidneys healthy. In many people with PKD, the manual is slightly “mis-written with a typo,” causing the protein to fold into the wrong shape. Because it’s misfolded, the body can’t use the abnormal polycystin protein. VX-407 is a small molecule that works as a protein corrector. It finds those misfolded proteins and helps them fold into the correct shape so they can get back to work, helping your kidneys.
Administration: If you qualify, this medication is taken as an oral pill.
Who Qualifies: This is a highly specialized precision drug. Currently, it is only designed for patients with a very specific subset of PKD1 gene variants. We estimate that less than 10% of the PKD population will qualify for this particular study based on their genetic profile.
Webinar Details:
Topic: VX-407 and the Genetics of PKD
Date: Thursday, April 30th
Time: 7:00 PM – 8:30 PM
Link to Join: Join our Cloud HD Video Meeting (No registration required—just click to join!)
Your Privacy: We want everyone to feel comfortable attending. Please note that participants will not be seen, but your screen name will be visible to the group. You will be able to ask questions during the session.
Next Steps & Reminders:
Genetic Testing: If you have not yet had your genetic testing done, please contact Susan for an appointment.
Trial Eligibility: You must be an active patient at Rogosin to join a Rogosin research trial. However, this webinar is open to the public, so feel free to share the link with anyone in the broader PKD community who may want to learn more about the genetics of PKD and VX-407.
Questions? If you have any questions, please reach out to Susan at 646-317-0715 or SUA9031@nyp.org.
If you cannot make it live, we will record the presentation and upload it to our YouTube channel and Apple Podcasts.
We will share the schedule for our upcoming farabursen webinar in the near future.
PKD1 Function and New Paths to ADPKD Therapies, PKD Research Updates (national and local), PKD and Diet: Practical
Tools for Everyday Eating, PKD in pediatrics.
Center of Excellence Spotlight: Caring for Patients with PKD
Join us for our upcoming community meeting via video conference!
To help answer your questions about clinical trials, the Rogosin Institute, a PKD Foundation Center of Excellence, launched the Rogosin Advanced Research Series.
Join us for an afternoon of laughter in NYC, all in support of the PKD Foundation and its vision of ending polycystic kidney disease (PKD). Enjoy a lineup of talented comedians while helping raise awareness and funds for those affected by PKD.
