Upcoming Events
July 15-17, Bethesda, MD
Genetic Alliance 2010 Annual Conference: Advancing Novel Partnerships
The Genetic Alliance Annual Conference is consistently inspirational and enables partnership among all stakeholders: advocates and community leaders, health and industry professionals, policymakers and academicians. We hope you will join us for another conference journey.
Conference Information and Registration <link to http://geneticalliance.org/conference2010>
Genetic Alliance 2010 Annual Conference: Advancing Novel Partnerships
The Genetic Alliance Annual Conference is consistently inspirational and enables partnership among all stakeholders: advocates and community leaders, health and industry professionals, policymakers and academicians. We hope you will join us for another conference journey.
Conference Information and Registration <link to http://geneticalliance.org/conference2010>
August 3-2, 2010, Minneapolis, MN
FDA Orphan Drug Workshop, Sponsored by the FDA Office of Orphan Products Development in Partnership with NORD and Genetic Alliance.
Workshop Brochure
FDA Orphan Drug Workshop, Sponsored by the FDA Office of Orphan Products Development in Partnership with NORD and Genetic Alliance.
Workshop Brochure
Past Events
February 4, 2010, Washington, DC
The third meeting of the committee included updates and presentations from FDA, NIH, Industry and Academia.
January 11-12, 2010, Bethesda, MD
NIH Office of Rare Diseases Research Uniting Rare Diseases- Advancing Rare Disease Research: The Intersection of Patient Registries, Biospecimen Repositories, and Clinical Data Workshop. Click for Details
January 10, 2010, Bethesda, MD
GRANDRx Registry and Repository Boot Camp A well-characterized cohort, with clearly established clinical endpoints, is essential for clinical trials. Registries and biorepositories are an important starting point, and this hands-on workshop engaged attendees in planning and further developing these important tools. Click Herefor meeting materials.
December 1-3, 2009, New York City
FasterCures A first-of-its-kind meeting that brought together philanthropy, medical research foundations, and the biopharmaceutical industry in an effort to forge strategic collaborations key to the timely development of new medical solutions. http://www.partneringforcures.org/
November 23, 2009, Washington DC
Institute of Medicine Committee on Accelerating Rare Diseases Research and Therapeutic Development Stakeholders presented at the second meeting of the committee, which aims to assess existing strategies to promote research discoveries and development of orphan products to improve the health of people with rare diseases and to consider, as part of a national policy framework, a wide range of public and private strategies and innovations. The third meeting of the committee included updates and presentations from FDA, NIH, Industry and Academia. Click for Details
September 9, 2009, Bethesda, MD
NIH Town Hall with Director Francis Collins Hundreds of stakeholders attended to both listen and engage in dialogue with Dr. Francis Collins who reviewed six key opportunity areas for NIH, the second of which was GRANDRx. Dr. Collins stated public-private partnerships are key to bridging the translational gap. The fourth area of opportunity was a greater focus on global health, and the need for public-private partnerships here as well. Submit comments to: NIH-LISTENS@nih.gov
July 17, 2009, Bethesda, MD
Genetic Alliance Annual Conference GRANDRx: Crafting a Plan for Rare Disease Drug Development Over 120 participants from advocacy, industry, government and academia gathered to launch GRANDRx, a new initiative for developing treatments for rare and neglected diseases. All publicly available slide presentations can be found in the Genetic Alliance Resource Repository
July 14, 2009 Bethesda, MD
National Institutes of Health Stephen Groft, Director, Office of Rare Diseases Research and Alan Guttmacher, Acting Director, National Human Genome Research Institute, acknowledged the launch of GRANDRx in a letter to GRAND Therapeutics Foundation. The activities of the new NIH TRND program and GRANDRx are complementary and the activities should be coordinated and synergized as appropriate. NIH will participate in GRANDRx activities.
January 26, 2009, Bethesda, MD
GRANDRx Stakeholder meeting with Industry The GRANDRx story was shared and discussed with industry stakeholders from biotech and pharma. Challenges and opportunities within the current system were discussed with a focus on assay development, molecular library screening, pre-clinical and clinical development and potential GRANDRx work in these areas, including the formation of workgroups in each area.
December 8-9, 2008, Rockville, MD
GRANDRx Stakeholder meeting with Advocacy The GRANDRx story was shared and discussed with disease advocacy organizations. The agenda included discussion of challenges and successes of therapeutic development, and a focus on specific parts of the system including chemical genomics, assay development, clinical cohort development.
Press Releases
May 20, 2009 NIH Announces New Program to Develop Therapeutics for Rare and Neglected Diseases
Genetic Alliance Issues Statement Applauding New NIH Therapeutics for Rare and Neglected Diseases Program (TRND) http://geneticalliance.org/ws_display.asp?filter=nih.therapeutics.press.release
NORD President Praises New NIH Initiative