The CDCN is taking a first-of-its-kind, business-inspired approach to advancing rare disease research.
Not only is it patient powered and patient focused, but the CDCN also has a novel approach to fighting Castleman’s disease, through scientific collaboration. Patient advocacy and progress in research go hand in hand, because getting results for patients is the number one goal.
It all starts with the Patients
A huge part of the CDCN is providing information, support and an understanding community for patients and loved ones of Castleman sufferers. Patient outreach and feedback is particularly important for a disease that is little understood, even by experts. This way patients’ needs are met faster and can be directly involved in research and breakthroughs for Castleman’s.
Few organizations are as patient led and powered as the CDCN. In fact a founding member of the CDCN, Dr. Fajgenbaum, is himself a Castleman’s patient. This direct connection of staff to patients, some staff even being patients, gives CDCN an important structural advantage, to quickly focus on what will help patients most.
Castleman’s is still mostly a mystery, from how it starts to how to treat it. For patients the most important thing is to have their disease finally understood, so they can receive better treatment.
Most rare disease organizations raise money and fund researcher’s work. This work is mostly done independently from one another, without information or specimen sharing. This slows progress and creates redundancies.
The collaborative network approach was designed to improve on this model, to expedite breakthroughs and get more new information faster. This way not only research goes faster, but improvement and creation of treatments for Castleman’s will happen sooner.
Researchers and experts in the field come together to decide on the best research directions and prioritize studies. This way the most vital research is put first to lay the necessary groundwork for any subsequent studies.
Then partnerships are established and money raised specifically for the studies decided upon. The CDCN also funds work through the traditional route of giving grants through applications.
Patients’ needs are heard, and incorporated into the network’s direction. The network also offers patients the opportunity to be involved in the research themselves, in giving vital blood and tissue samples to drive forward research for them
This combination of patient driven work and a collaborative research culture has created a one of a kind group, in which real progress can be made efficiently and quickly. Castleman’s is a formidable and difficult disease, but with the CDCN’s work and your help, we can fight and beat it!