Part II of the Genetic Alliance Interactive Guide

Funding Research by Others

What if you can't find anyone to work on your condition? There are very creative ways to encourage research on your condition, You can offer to work in their lab if you are nearby. You can find other groups that have similar concerns about a body system - for example, both tuberous sclerosis and Sturge Weber Syndrome are concerned with angiogenesis (blood vessel growth). The lay groups associated with the condition can meet with researchers together to see if together they can fund a project.

Many groups fund research done by a variety of laboratories. These groups usually have an application process and subsequent review process. Sometimes the lay group develops a request for proposals and other times solicits any and all research.

Making decisions about how much research to fund and what research to fund is very complicated, but well within the scope of lay advocacy groups as exemplified by the long time, extensive involvement of organizations such as the Cystic Fibrosis Foundation, the Hereditary Disease Foundation and the National Tay-Sachs & Allied Diseases Association.

The Genetic Alliance wholeheartedly supports collaboration between voluntary genetic organizations, lay advocacy groups and the research community to promote and coordinate rare disease research efforts.

The Alliance brings consumers and professionals together to promote the needs and interests of children, adults and families living with genetic conditions. Currently numbering 600 lay advocacy groups and 1000 individual consumers and professional members, the Alliance was founded in 1986, inspired by the lay advocacy group and self help movements. For more than twelve years this alliance of consumers and professionals has fostered partnership solutions to common concerns about access and availability of genetic services and support resources.

The Alliance's experience in working with consumers and professionals provides us with a unique framework from which to evaluate genetic research studies.

» Barriers to Rare Disease Research

Privacy Policy - Disclaimer - Funding
Maintained by the Genetic Alliance.
The Interactive Guide to Advocacy Groups was written by Sharon Fontaine Terry and Caitlin Burke, with contributions from Genetic Alliance members. The Interactive Guide to Building Advocacy Groups is made available under a Creative Commons license. You may make and share copies of this work for noncommercial purposes without modifications and with this acknowledgement included in full. More information is available at About the Interactive Guide to Building Advocacy Groups.

Send feedback about the Interactive Guide.

SEPTEMBER 2004: This is a preliminary installation of the Interactive Guide to Advocacy Groups. We need your feedback. Make comments on specific pages (you may see error messages, but comments should still post), or send email. Is something missing? Can we make it easier to navigate? This Guide will change regularly over the next few months as we incorporate changes and fine tune the site. Thank you!

AN INTERACTIVE GUIDE TO BUILDING ADVOCACY GROUPS
Part II
Part I Part II Assessment Structure Resources Support Education Research Advocacy Part III	Funding Research by Others What if you can't find anyone to work on your condition? There are very creative ways to encourage research on your condition, You can offer to work in their lab if you are nearby. You can find other groups that have similar concerns about a body system - for example, both tuberous sclerosis and Sturge Weber Syndrome are concerned with angiogenesis (blood vessel growth). The lay groups associated with the condition can meet with researchers together to see if together they can fund a project. Many groups fund research done by a variety of laboratories. These groups usually have an application process and subsequent review process. Sometimes the lay group develops a request for proposals and other times solicits any and all research. Making decisions about how much research to fund and what research to fund is very complicated, but well within the scope of lay advocacy groups as exemplified by the long time, extensive involvement of organizations such as the Cystic Fibrosis Foundation, the Hereditary Disease Foundation and the National Tay-Sachs & Allied Diseases Association. The Genetic Alliance wholeheartedly supports collaboration between voluntary genetic organizations, lay advocacy groups and the research community to promote and coordinate rare disease research efforts. The Alliance brings consumers and professionals together to promote the needs and interests of children, adults and families living with genetic conditions. Currently numbering 600 lay advocacy groups and 1000 individual consumers and professional members, the Alliance was founded in 1986, inspired by the lay advocacy group and self help movements. For more than twelve years this alliance of consumers and professionals has fostered partnership solutions to common concerns about access and availability of genetic services and support resources. The Alliance's experience in working with consumers and professionals provides us with a unique framework from which to evaluate genetic research studies. » Barriers to Rare Disease Research Privacy Policy - Disclaimer - Funding Maintained by the Genetic Alliance. The Interactive Guide to Advocacy Groups was written by Sharon Fontaine Terry and Caitlin Burke, with contributions from Genetic Alliance members. The Interactive Guide to Building Advocacy Groups is made available under a Creative Commons license. You may make and share copies of this work for noncommercial purposes without modifications and with this acknowledgement included in full. More information is available at About the Interactive Guide to Building Advocacy Groups. Send feedback about the Interactive Guide. SEPTEMBER 2004: This is a preliminary installation of the Interactive Guide to Advocacy Groups. We need your feedback. Make comments on specific pages (you may see error messages, but comments should still post), or send email. Is something missing? Can we make it easier to navigate? This Guide will change regularly over the next few months as we incorporate changes and fine tune the site. Thank you!	« Promoting Research on a Disease » Barriers to Rare Disease Research