Search results

or 877.336.5333 Fax: 920.339.0995 Email: mums@netnet.net National Organization for Rare Disorders (NORD) 55 Kenosia Avenue PO Box 1968 Danbury, CT 06813-1968

research and scientific programs, and advocacy organizations. National Organization for Rare Disorders (NORD) 55 Kenosia Avenue PO Box 1968 Danbury, CT

Genetic Alliance National Organization of Rare Disorders Research!America National Health Council Coalition for Heritable Disorders of Connective Tissue

network for parents of children with rare chromosomal deletions, the Chromosome Deletion Outreach Network. The National Organization for Rare Disorders (NORD)

Genetic Alliance National Organization of Rare Disorders Research!America National Health Council Coalition for Heritable Disorders of Connective Tissue

researcher.’’ →Responder 1 replied: I wonder if the Canadian Organization for Rare Disorders might be of some help with this situation? http://www.raredisorders

translation from bench to bedside Funds provided for travel to semi-annual CWW meetings and for travel between labs for collaborations Multi-year grant awards to

Therapeutics for Rare and Neglected Diseases- Therapeutics for Rare and Neglected Diseases (TRND) is a congressionally mandated program at the National Institutes

Foundation is REACH for a Cure -- Research, Education, Awareness, with Compassion and Hope. For more information about these rare cancers, contact the

representation standards for effective data exchange and mining. Barriers to Rare Disease Research Benefits of Collaboration with Advocacy Organization Community Consumers

American medicine, is becoming rare, and there are few instances in which it can be more valuable as in the case of a rare disorder. This is not a decision to

advocacy organizations and the research community to promote and coordinate rare condition research efforts. If your organization is funding research, one

lay out a plan to help your organization define your path to the answers. The challenge is that the path for every organization and every condition will be

federation that will come together for the common good and needs of the alpha-1 community for external purposes." Barriers to Rare Disease Research Benefits of

also check out the Setting Up A National Conference page. We're a small organization and our children's syndrome is rare... and our children are extremely

advocacy organization can become an important broker of information about its target condition. The size and goals of your organization will determine how

for its target population. The advocacy organization has functions in four major areas: Family: An advocacy organization almost always has family support

Others Barriers to Rare Disease Research Consumers and Researchers: Making It Work Benefits of Collaboration with Advocacy Organization Community Facilitating