Promoting Research
From WikiAdvocacy
Encouraging research on a particular condition is not impossible—given the right ingredients. However, unlike a deli counter, you can't take a number and wait until the researchers get to you—you've got to do the work!
[edit] Getting Research Started on PXE
- Patrick Terry
- PXE International
"We collaborated with extramural researchers—researchers who receive money from NIH to conduct research—and at that level were able to influence what research was done on PXE. We didn't just call up a lab and say, "Shove everything else to the side and do PXE!" We started by reading the literature—particularly by searching the NIH's PubMed and CRISP, a database of biomedical research funding.
Then we contacted scientists doing any research even remotely related to PXE. All of them were very receptive toward meeting with us. We went and spoke to them and said, "How can we help?" In some instances we asked if we could fund a post-doctoral fellow in their lab for a small amount of money or if they could add a project on if we supported it in any other way.
Our collaborations grew until they now include more than 19 labs around the world and several companies—including a major collaboration with Transgenomic. One of the labs got an NIH grant for PXE research, and our small seed money paid off big time!
We have also always felt that helping other organizations and conditions achieve their goals would be beneficial for the system, thus our heavy involvement in Genetic Alliance, the Coalition of Heritable Disorders of Connective Tissue, and the Coalition of Skin Diseases. In the end we will all benefit; staking out our territory and earmarking would not have given us all we have now. And it isn't that we are satisfied. No, we are always hungry for more—our kids are still suffering the effects of the condition—so we have to fight hard—but we chose to fight alongside all of you, moving the front line together."
Sometimes it isn't money at all that is needed. Sometimes, just access to affected individuals, their data and their samples is all that it takes to get research going. Advocacy organizations can build resources that are very powerful, very useful, and provide the highest protections for affected individuals and their families.
[edit] Internal Links
- Barriers to Rare Disease Research
- Benefits of Collaboration with Advocacy Organization Community
- Blood and Tissue Banks
- Consumers and Researchers
- Educating Membership about Research
- Facilitating Quality Research
- Funding Research by Others
- Getting Needs onto the Research Agenda
- Genetic Privacy
- Orphan Drug Application
- Patient's Bill of Rights
- Registries
- Research Models
