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ROADMAP Data Extraction

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We here at the Castleman Disease Collaborative network (CDCN) are looking for individuals who are interested in volunteering for an important data aggregation project.

About the project
As some of you may know, currently there are around 7,000 diseases rare and deadly diseases, 95% of which have no FDA-approved treatments. Since the incentives for new drug development for rare diseases are limited, drug repurposing provides a promising way to identify effective treatments for rare diseases faster and cheaper than developing new drugs. Still, many challenges exist in the drug repurposing space, one of which is lack of data on rare disease non profit organizations which are involved in the drug repurposing process.
This is why, in partnership with the Chan Zuckerberg Initiative, the Repurposing Of All Drugs, Mapping All Paths (ROADMAP) project was launched to fill some of these knowledge gaps. Ultimately, this project aims to not only answer some fundamental questions about the experience of drug repurposing for various stakeholders, but to also design a solution to some of the challenges rare disease organizations are facing through the creation of an interactive tool. Learn more at

Volunteer Task Description
We are looking for volunteers in a variety of ways, depending on experience, interest and availability. We are open to working with students, researchers, academics, or working professionals from all fields of interest and experience. No prior medical knowledge is necessary for this project. Our current goal is to collect data from a sample of 900+ rare disease organizations in the next 2 months. We need your help! In the future, other volunteer tasks may also come up if there is interest in continued involvement in the project in the fall. Some other possible tasks outlined below:Data Collection

  • (MAIN NEED RIGHT NOW) Extracting information from rare disease organizations’ websites
  • Annotation and analysis of documents and resources
  • Looking up drug approval labels to identify instances of drug repurposing
  • Support for setting up interviews, sending pre-emails, follow up thank you’s, gaining consent
  • Transcription and transcript clean up
  • Creation of social media posts and graphics
  • Project promotion and outreach
  • Ongoing design input for iteration of final product
Literature Review & Writing
  • Literature review for publications
  • Report and paper writing support
Please reach out to project lead Ania Korsunska at to express your interest!


No additional volunteer opportunities at this time.



PO BOX 3614, PASO ROBLES, CA 93447, US

Mission Statement

The Castleman Disease Collaborative Network (CDCN) is a global initiative dedicated to accelerating research and treatment for Castleman disease (CD) to improve survival for all patients with CD. We work to achieve this by facilitating collaboration among the global research community, mobilizing resources, strategically investing in high-impact research, and supporting patients and their loved ones. CD describes a group of inflammatory disorders that vary from a single enlarged lymph node to life-threatening multiple organ failure. CD is diagnosed in approximately 4,300 to 5,200 patients of all ages each year in the U.S.


Our story began when third-year medical student David Fajgenbaum was struck and almost killed by Castleman disease. After several relapses and recoveries, plus a completed medical degree, the Castleman Disease Collaborative Network (CDCN) was co-founded in 2012 by Dr. David Fajgenbaum and Dr. Frits van Rhee (of the University of Arkansas for Medical Sciences). The goal from the start was to accelerate research to find a cure for Castleman disease (CD) and improve survival for all patients with CD. Drs. Fajgenbaum and van Rhee quickly brought together a global team of other physicians, researchers, patients, and loved ones, and their collaboration has made tremendous progress over the last five years.

The CDCN created an innovative roadmap to accelerate CD research and treatment discovery by leveraging and integrating the entire community of stakeholders - patients, loved ones, physicians, and researchers.

Advocacy & Human Rights
Health & Medicine


Sun Aug 01, 2021 - Fri Oct 01, 2021


This is a Virtual Opportunity with no fixed address.


  • Data Entry
  • Internet Research
  • Critical Thinking
  • Organization
  • Problem Solving
  • Reading Comprehension


  • People 55+
  • Group


  • Must be at least 18
  • Orientation or Training
  • Time commitment is flexible based on availability, but around 3 hours a week minimum. Outside of a weekly 30 minute meeting, work can be done remotely, any time and any day.
  • Participants need to accept an invitation to our Slack channel and download Zotero program to their computers. Both are free to use for participants.

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