6/11/2019 PHILADELPHIA (June 2019) — The Castleman Disease Collaborative Network
(CDCN) is proud to announce a new partnership with the Chan Zuckerberg Initiative (CZI) to strengthen and scale the CDCN’s collaborative network approach to advance cures for CDCN and other rare diseases. CDCN’s model inspired CZI’s Rare As One Project, committed to uniting rare disease communities in their quest for cures. As part of the Rare As One Project, CZI is inviting patient-led 501(c)(3) organizations to apply for a two-year funding opportunity to develop and launch collaborative research networks in partnership with clinicians and scientists. These grants will provide funding, tools, and capacity-building support and training to select organizations.
“The CDCN is proud to be recognized as one of the leaders in rare disease research by the Chan Zuckerberg Initiative and looks forward to collaborating with other rare disease organizations so that we may share our findings and learn from other organizations. It’s important for our communities to band together to create economies of scale in our fight against rare diseases, which will ultimately save lives at a faster pace,”
— Dr. David Fajgenbaum, co-founder of the CDCN and idiopathic multicentric Castleman Disease (iMCD) patient
The mission of the CDCN is to globally accelerate research to find a cure for Castleman Disease and improve survival for all patients. This is accomplished by focusing on research, patient engagement, strategic collaborations, awareness, and fundraising. A unique model created out of patient need — to find cures faster. Castleman disease is a rare disease that is difficult to define and even harder to treat. It is a rare condition that is not well known, even within the medical community. The CDCN has the latest, most accurate information about the fight against CD. Please sign up to join the physician, researcher, or patient network. Become a Castleman Warrior and join the fight against CD today. www.cdcn.org/about-us. To donate please visit cdcn.org, info@castlemannetwork.org, 610-304-0696, Castleman Disease Collaborative Network – P.O. Box 3614 – Paso Robles, CA 93447
About Castleman Disease (CD)
CD is formally diagnosed via lymph node biopsy and presents in three forms: Unicentric Castleman Disease (UCD), which has a high cure rate; HHV-8 associated Multicentric CD, which can be controlled and treated in many patients – but there is no cure; and idiopathic Multicentric CD (iMCD), for which treatments are available but they do not work in all patients – there is no cure. Symptoms of MCD often overlap with other diseases and can take extended time to diagnose. Symptoms include discomfort associated with large lymph nodes, night sweats, fatigue, fevers, weight loss, edema, pleural effusions, and ascites.
About Castleman Disease Collaborative Network (CDCN)
The CDCN is the global leader in the fight against CD and does so by keeping people informed about the advances that have been made and by actively enabling people to make a difference through research and fundraising. For more information, please visit https://www.cdcn.org/.
About Chan Zuckerberg Initiative (CZI)
Founded by Dr. Priscilla Chan and Mark Zuckerberg in 2015, the Chan Zuckerberg Initiative (CZI) is a new kind of philanthropy that’s leveraging technology to help solve some of the world’s toughest challenges — from eradicating disease, to improving education, to reforming the criminal justice system. Across three core Initiative focus areas of Science, Education, and Justice & Opportunity, we’re pairing engineering with grant-making, impact investing, and policy and advocacy work to help build an inclusive, just and healthy future for everyone. For more information, please visit www.chanzuckerberg.com.
About CZI’s Rare As One Project
With guidance from patient communities, rare disease experts, and advocacy organizations, the Rare As One Project helps communities of patients, researchers, and clinicians work together to advance progress against their diseases and scale these efforts through capacity-building services. The Project provides funding, technology, mentorship, and capacity-building services for patient-led organizations. Since December 2017, CZI has made four learning grants in the rare disease space, which includes a grant to the CDCN. For more information regarding current grant applications, please visit https://chanzuckerberg.com/rfa/rare-as-one/.
“At CZI, we believe that solutions to problems lie with the communities we are aiming to serve, so we are building out our program in partnership with rare disease organizations. We’re working with the Castleman Disease Collaborative Network to inventory the tools and capacity-building resources that they and other patients groups are currently using to build and sustain patient-led research networks and identify gaps.”