Patient-Focused Drug Development Session

Greetings! The RCDP Community has an opportunity to participate in a landmark event hosted by RhizoKids International on July 20 during the 2024 RhizoKids Conference! This hybrid (in-person and online) event, known as the RCDP Patient-Focused Drug Development (PFDD) session, will help make “what matters most” to those who have experience with RCDP, both today and previously, a higher priority in drug development and the FDA review process. We need your voice to make this happen!

Here’s how you can get involved:

·         Register to participate in the PFDD session on July 20. This session will only be successful if people representing children with RCDP actively participate either in person or on-line. Please spare some time on July 20 to help us achieve this goal. During the session, you’ll have an opportunity to respond to live polling questions and participate in a moderated discussion to share your perspectives on RCDP. Everyone in our community is welcome. Click here to register.

·         Apply to be a panelist at the PFDD session. The session will include two panels of people representing children with RCDP: one about the health effects and daily impacts of the condition and one about experiences with RCDP treatments. If you are interested in being a panelist, please let us know via the online registration form.

·         Share your thoughts by participating in a survey. We will be inviting you to participate in a survey to inform the PFDD session design and communications to FDA and drug developers on “what matters most” to our community. There will be one survey response per individual living with or who earlier lived with RCDP. Keep an eye out for this invitation in the coming weeks.

Your active participation and input will help make this session a success. This is an incredible opportunity for you to advocate for children with RCDP and help improve the development of treatments. We hope you will join us!