As a network of physicians, researchers, and patients, and with the support of our nonprofit-umbrella organization (CARE), the CDCN is able to connect the six key players involved in advancing research, which helps to accelerate the pace of progress. Please contact us if you're interested in partnering with the CDCN.
The Castleman Center for Reference serves as a resource for French and French speaking Castleman disease patients. Led by Castleman disease experts, the center aims to educate and provide resources for patients, as well as get hellp register for the ACCLERATE research database. For more information, visit http://www.castleman.fr/
RCRF is dedicated to curing the more than 600 cancers considered to be rare through strategic investments and collaborations that catalyze effective research and accelerate deployment of promising therapies. RCRF translates oncology innovations for common cancers to treat rare cancers. Leveraging economies of scale, RCRF employs shared solutions to enable every rare cancer to have access to the research building blocks that will lead to a cure. For more information, go to www.rcrf.org.
Global Genes™ is one of the leading rare disease patient advocacy organizations in the world. The non-profit organization promotes the needs of the rare disease community under a unifying symbol of hope – the Blue Denim Genes Ribbon™. What began as a grassroots movement in 2009 , with just a few rare disease parent advocates and foundations , has since grown to over 500 global organizations. A link to their RARE toolkit can be found here. For more information go to http://globalgenes.org/.
The National Organization for Rare Disorders (NORD), a 501(c)(3) organization, is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service. To see more information, visit www.rarediseases.org.
The Pancreatic Cancer Action Network is a network dedicated to advancing research and helping patients with pancreatic cancer. PCAN accomplishes this by creating hope through community outreach, patient support, research, and government advocacy. www.pancan.org
The Scleroderma Foundation is the national foundation for people with scleroderma and their families. Scleroderma Foundation is dedicated to supporting patients and families cope with scleroderma, promoting public awareness and education, as well as stimulating research to improve treatment and cure scleroderma. www.scleroderma.org
Abrale’s objective is to support cures and improve the quality of life for people living with blood cancer and Thalassemia in Brazil. www.abrale.org.br
Pennsylvania Bio’s mission is to ensure Pennsylvania is the United States hub for the life sciences by creating a business and public policy environment which fosters life sciences growth and success. www.pabio.org
UAMS Myeloma Institute is the most comprehensive center in the worldfor research and clinical care related to multiple myeloma and related diseases, such as Castleman Disease and Waldenstrom Macroglobulemia. Leading scientists and clinicians has pioneered many advances that have become standards of care, leading to improved survival rates. For more information, visit http://myeloma.uams.edu/myeloma-related-diseases/information-on-castleman-disease/