A virtual workshop series to create new cross-disciplinary collaborations in rare disease research

The Chan Zuckerberg Initiative has launched two Requests for Applications (RFA) for grant opportunities that will fund collaborative teams bringing together patient-led rare disease organizations and research teams for 4-year research projects aimed at advancing our understanding of the fundamental science of rare diseases. Applications are being accepted for two funding opportunities:

  1. Patient-Partnered Collaborations for Rare Neurodegenerative Disease: to advance the understanding of the biological mechanisms of rare neurodegenerative and neurological disorders. Learn more about this RFA.
  2. Patient-Partnered Collaborations for Single-Cell Analysis of Rare Inflammatory Pediatric Disease: to support the application of single-cell biology methods to rare inflammatory pediatric diseases. Learn more about this RFA.

Together, these RFAs aim to support patient-centered, foundational science-focused projects that seek to characterize the cellular mechanisms underlying rare diseases. For many rare and ultra-rare disorders, even when there is a diagnosis, the lack of understanding of disease biology is a critical bottleneck for developing treatments. Each of these funding opportunities recognizes patient-led organizations as central to connecting researchers and the patient community, defining research questions and priorities, contributing to study design and execution, supporting outreach, disseminating study results and more. These RFAs are open to either existing patient-organization and researcher collaborative teams or to new collaborations. We are particularly encouraging of researchers and organizations who are looking to develop new collaborations and to researchers and organizations representing disease areas where there are health inequities.

Join us on Wednesday, February 16th, from 9am-10:30am Pacific Time for a webinar Information Session to learn more about both RFAs: Patient-Partnered Collaborations for Rare Neurodegenerative Disease and Patient-Partnered Collaborations for Single-Cell Analysis of Rare Inflammatory Pediatric Disease.

In follow-up to the Information Session, we will be providing a three-part series of targeted networking workshops for the Patient-Partnered Collaborations for Rare Neurodegenerative Disease RFA. These will be webinar-based events where you will have a chance to engage with other groups and potential collaborators. The goals of these Networking Workshops are to provide opportunities for researchers and patient groups with interests in neurodegenerative disease to connect with each other and potentially form collaborations and project teams for application to this RFA.

Advance registration for all events is required (see below).

Please note that we will not be hosting similar events related to the Patient-Partnered Collaborations for Single-Cell Analysis of Rare Inflammatory Pediatric Disease RFA.

Information Session

Wednesday, February 16th, 9am-10:30am Pacific Time

Informational webinar to learn more about both CZI Patient-Partnered Collaborations Requests For Applications (RFAs), scope, eligibility, and follow-up engagement.
  1. Patient-Partnered Collaborations (PPC) for Rare Neurodegenerative Disease
  2. Patient-Partnered Collaborations (PPC) for Single-cell Analysis of Rare Inflammatory Pediatric Disease
Watch the recording of the Information Session here:

The Rare Neurodegenerative Disease Engagement Workshop Series

Below you will find more information about the Workshop series and what to expect from each of the three sessions. This series of networking events and workshops aims to catalyze new collaborations between patient research organizations and researchers, and to bring together existing teams interested in applying to the Patient-Partnered Collaborations for Rare Neurodegenerative Disease RFA. Registration is required and in some cases, space will be limited. You may register for sessions depending on your interest. It is not necessary to participate in all three sessions. All sessions will be virtual. Note that participation in these Workshops is not required for application to the RFAs and priority will not be given to those who attend the workshops.

Session Details

Note that the sessions I, II, and III below will be focused on the PPC for Rare Neurodegenerative Disease RFA only.


Session I - Networking Workshop 1

Tuesday, March 15th, 9am-11am Pacific Time

Workshop 1 is an interactive opportunity for registered attendees (patient groups and researchers) to hear examples of what successful patient-partnered research collaborations might look like and connect and network with one another around the PPC for Rare Neurodegenerative Disease RFA. Sessions I and II are open to broad participation but we are specifically targeting groups who are aiming to apply for the Patient-Partnered Collaborations (PPC) for Rare Neurodegenerative Disease RFA. These sessions are open to researchers and patient-advocates who are a part of active or past collaborations or individuals who are looking to find new collaborators and partners.

Focus: What do successful patient-partnered research collaborations look like?


Watch the recording of the Networking Workshop 1 here:

Session II - Networking Workshop 2

Monday, March 28th, 9am-11am Pacific Time

Workshop 2 is an interactive opportunity for registered attendees (patient groups and researchers) to hear examples of what successful patient-partnered research collaborations might look like and to connect and network with one another around the Patient-Partnered Collaborations (PPC) for Rare Neurodegenerative Disease. See above for eligibility for sessions I and II.

Focus: Key factors to success and challenges to overcome during patient-partnered research collaborations.


Watch the recording of the Networking Workshop 2 here:

Session III - One-day Networking Expo

Wednesday, April 20th, 9am-3pm Pacific Time

The Networking Expo is a one-day ideation and matchmaking workshop specifically designed as an opportunity for researchers and patient-advocates/organizations who are looking to develop a new collaboration to connect around potential projects for the Patient-Partnered Collaborations (PPC) for Rare Neurodegenerative Disease RFA. Space is limited for these sessions and participants will be selected through a brief application process, used to determine eligibility. Note that the application for the Networking Expo is distinct from the RFA application. Stay tuned to this site for more information about the application to the one-day Networking Expo.

Applications will be approved on a rolling basis.

Applications for the Networking Expo will be accepted from March 15th to April 15th, 5pm Pacific Time.

Registration is closed.

What can I expect from the Networking Workshops and Expo? What are the expectations from participants?

  • A goal of this interactive format is to provide opportunities for participants to actively engage with each other, to explore ideas and potential opportunities for collaboration, and where appropriate, plan for an application to the Patient-Partnered Collaborations (PPC) for Rare Neurodegenerative Disease RFA.
  • All events will be hosted virtually and include an online web platform where participants can register, find one another and network with each other. Live sessions will be held using the Zoom platform.
  • Advance application is required for all sessions, and participants will be selected based on their application.
  • All participants should be willing to engage in frank discussion and assessment of ideas in a collegial and professional fashion (see Community Participation Guidelines below).
Networking Workshops (Sessions I and II)
  • The two 120-minute Networking Workshops are intended to bring patient groups and researchers together.
  • Participants will hear examples of what successful patient-partnered research collaborations might look like, how to maintain successful partnerships, and what key factors can contribute to success.
  • The Networking Workshop (Sessions I and I) will lead with panel discussions from existing patient groups and researchers and will be followed by small-group interactive networking/discussion groups. Here, participants will engage with each other, meet in small groups, and share their perspectives.
  • The panel discussions will be recorded and made available on this website for anyone interested to view them after the event. The content of the Networking/Discussion groups will be closed and not be shared publicly.
Networking Expo
  • The Networking Expo is a one-day ideation and matchmaking workshop specifically designed as an opportunity for researchers and patient-advocates/organizations who are looking to develop a new collaboration to apply for the Patient-Partnered Collaborations (PPC) for Rare Neurodegenerative Disease RFA.
  • Participants will interactively co-develop ideas through facilitated interactions with diverse individuals across disciplines, backgrounds, and perspectives.
  • Space is limited for the Networking Expo and participants will be selected through an application process. Commitment to participating the full day is required.

Who Should Attend This Series?

  • The initial RFA Information Session is open to anyone with an interest in applying to either of these RFAs. Advance registration is required.
  • The Networking Workshops and Expo are aimed at researchers and patient organizations that are seeking new collaborative partners. We encourage anyone looking to form a research team in preparation for Patient-Partnered Collaborations for Rare Neurodegenerative Disease RFA to register. However, participation in these Networking events is not required for application to the RFA, and preference will not be given to those who attend.
  • Please see the RFA page for further information about the Patient-Partnered Collaborations (PPC) for Rare Neurodegenerative Disease RFA, including the goals and scope of the RFA and the relevant disease areas considered within scope of the RFA.

Community Participation Guidelines

CZI is committed to creating and maintaining an environment where everyone is welcomed, respected, and supported. We want our grantees and partners to have an opportunity to participate and contribute, and to be valued for their skills, experience, and unique perspectives. As such, we have created Community Participation Guidelines and expect all those who participate in CZI communities to hold themselves accountable to them—whether participating in a meeting, convening, workshop, online discussion, or other forum. You can find these guidelines at czi.co/CPG.

Additional Information

If you have questions or need additional information, please email our organizing team at donnalyn.roxey@knowinnovation.com

For more details about the RFAs, application timeline, eligibility requirements and more, please visit the following RFA websites: