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Press Release Archive

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This archive contains press releases that Genetic Alliance and the Alliance of Genetic Support Groups have released over the years. Press releases are saved as digital PDF files, which are cataloged below. For current press releases, please click here.

Press Releases (2014-1996)

2014 |2013 |2012 |2011 | 2010 | 2009 | 2008 | 2007 | 2006 | 2005 | 2004 | 2003-1996


Genetic Alliance Receives Robert Wood Johnson Foundation Grant, December 22, 2014

DC Outreach, Inc. and PXE International Patient Registries Launch, November 19, 2014

Hepatitis Foundation International Patient Registry Network (HepPRN) Launched Today, October 21, 2014

Genetic Alliance Wins Multi-Million Dollar Newborn Screening Award, September 17, 2014

PCORnet CENA Project Launch, September 15, 2014

Genetic Alliance Applauds Major Step in Mitochondrial Disease Research, August 26, 2014

Genetic Alliance Announces Winners of the Impact Awards, May 30, 2014

Baby’s First Test, the Nation’s Educational Resource Center for Newborn Screening, Announces 2014 Challenge Award Recipients, May 7, 2014

Genetic Alliance Announces Funding for Outreach and Education Programs. Impact Awards Request For Proposals Released, January 17, 2014


Genetic Alliance team among PCORI funding recipients to establish the National Patient Centered Clinical Research Network, December 18, 2013

Genetics in Primary Care Institute Presents a NEW tablet-based Pediatric Family Health History Tool, November 22, 2013

Genetic Alliance & PhRMA Announce Pilot Initiative to Advance Patient-Focused Drug Development, November 4, 2013

Empowering Individuals and Families as Advocates The Advocacy ATLAS: Accessible Tools for Leadership and Advocacy Success, October 10, 2013

Genetic Alliance Launches New Web Resource for the Public: Offers In-Depth Information on Genetics Services and Access to Experts, August 14, 2013

Genetic Alliance Selects Oracle Health Sciences Network to Help Patients Gain Access to Clinical Trials, June 24, 2013

International Initiative Applauds the Supreme Court Decision Eliminating Gene Patents and Announces the Launch of a Public Database for Hereditary Gene Mutations, June 13, 2013

International Collaboration Announced to Develop GaugeRx, June 10, 2013

New Educational Resource Prepares Clinicians for Genomic Medicine, May 22, 2013

Federal Advisory Committee Recommends Pompe Disease for Newborn Screening, May 17, 2013

Genetic Alliance Announces Registries for All, April 5, 2013

One Stop Shopping for All Diseases: Genetic Alliance Launches Disease InfoSearch, March 19, 2013

Genetic Alliance Funds Innovation in Newborn Screening, March 7, 2013

Genetic Alliance and Inspire Partner on Rare and Genetic Disease Support Community, February 28, 2013


Registries for All Diseases wins $300k to create crowdsourced cross-disease registry, December 12, 2012

Genetic Alliance Funds Innovation in Newborn Screening, September 19, 2012

Genetic Alliance Celebrates Great Day for Translational Science September 14, 2012

Happy Birthday to Baby’s First Test! September 12, 2012

Genetic Alliance Applauds Supreme Court Decision on Affordable Care Act, June 28, 2012


2012 Baby's First Test Challenge Awards - Request for Proposals, October 6, 2011

2012 Consumer Task Force on Newborn Screening Request for Applications, September 28, 2011

Genomics Education Program for Physicians Launches at El Camino Hospital, September 26, 2011

Health and Human Services Secretary Adopts New Recommendation on Newborn Screening, September 22, 2011

March of Dimes and Partners Begin Testing New Electronic Tool, September 21, 2011

Genetic Alliance Launches Vital Newborn Screening Resource, September 7, 2011

Does It Run In the Family? Toolkit Will Soon Be Available at Federal Health Centers Nationwide, June 2, 2011 

Founder’s Service Award, May 25, 2011

BabysFirstTest: The Newborn Screening Clearinghouse Funds Novel Initiatives, April 5, 2011

Genetic Alliance Launches Collaboration with Exceptional Parent Magazine, April 5, 2011

Genetic Alliance Celebrates the Art of Reporting Award, March 10, 2011

Award-Winning Vendor Selected to Develop, March 2, 2011

Genetic Alliance Celebrates the Art of Listening, February 24, 2011

Genetic Alliance Funds Innovation in Newborn Screening through Challenge Awards, January 27, 2011


Genetic Alliance Leads Integration of Family Health History into Community Health Centers, November 3, 2010

New Educational Resources on Law Against Genetic Discrimination Now Available, June 3, 2010

Collection of Newborn Screening Videos Provides Unique Forum for Information Sharing, April 29, 2010

New Jersey Consortium of Care to Receive First Ever National Award for Novel Partnership, April 21, 2010

Biomedical Trailblazer to Receive National Award for Advancing Health through Advocacy, April 7, 2010

Genetic Alliance Celebrates Announcement of Genetic Tests Registry, March 18, 2010

Genetic Alliance President Joins Prestigious Fellow Program for Global Organization, March 17, 2010

The Power of the Ear and the Voice, March 17, 2010

Position of Genetic Alliance on Breast Cancer Gene Patent Case, January 29, 2010

Federal Advisory Committee Recommends SCID for Universal Newborn Screening, January 27, 2010

Future of Newborn Screening Envisioned: Proceedings Now Viewable Online, January 7, 2010


Genetic Alliance Selected as One of Washingtonian’s Great Places to Work, October 22, 2009

Patient and Provider Education at the Heart of New Prenatal and Early Childhood Diagnosis Program, October 6, 2009

Pioneering HHS HRSA Grant Funds Establishment of First National Newborn Screening Clearinghouse, September 16, 2009

Does it Run in the Family? Tool Guides Collection of Life-Saving Information, August 26, 2009

Genetic Alliance Welcomes Gene Early to the Council, August 25, 2009

Newborn Screening Bloodspots: How Can We Preserve Both This National Treasure and
Patient Privacy?
, August 22, 2009

Private Access Announces Commercial Beta Release of Privacy-Enhanced Search Technology, August 19, 2009

Genetic Alliance Celebrates the Confirmation of New NIH Director Francis S. Collins, MD, PhD, August 7, 2009

New HHS HRSA Grant Will Fund Development of an Electronic Genetic and Family History Record for Doctors’ Offices, July 14, 2009

Genetic Alliance Commends the Nomination of Francis S. Collins, MD, PhD, as New NIH Director, July 8, 2009

HITSP Begins Harmonization Process for Use of Electronic Health Records in Clinical Research, June 15, 2009

Genetic Alliance Issues Statement Applauding New NIH Therapeutics for Rare and Neglected Diseases Program, May 20, 2009

Sharon Terry Appointed to Health IT Standards Committee, May 11, 2009

Overhaul of Genetic and Other Advanced Diagnostics Testing Regulations Necessary for Personalized Medicine, May 5, 2009

Genetic Alliance Unveils Senior Management Positions, April 8, 2009

Genetic Alliance Honored with Research!America Advocacy Award, March 20, 2009

Leaders in Health and Genetics Acknowledged by Genetic Alliance Awards, March 10, 2009

Reverend Dr. Susan King Accepts Genetic Alliance Council Appointment, March 2, 2009

ANSI Seeks Funding to Ensure that Electronic Health Records Will Support Clinical Research Activities, February 13, 2009

The American Society of Human Genetics and Genetic Alliance to Host Live Phone Bank in Partnership with Aetna and WJLA-TV ABC7>, January 26, 2009


Genetic Alliance Strengthens Internal Leadership, December 3, 2008

Genetic Alliance Names Sharon Kardia, PhD, as New Council Member, December 1, 2008

New Director of Genetics and Health Policy Joins Genetic Alliance, November 14, 2008

Genetic Alliance Issues Statement Commemorating the Life of The Honorable Paul G. Rogers, October 14, 2008

PLOS and SPARC Release New “Voices of Open Access” Video Series, October 14, 2008

Genetic Alliance Issues Statement on the Resignation of NIH Director Elias Zerhouni, MD, September 26, 2008

Guide Launched to Prepare Americans for Newly Passed Health Legislation, September 9, 2008

Private Access and Genetic Alliance Announce Strategic Partnership to Accelerate Medical Research While Protecting Privacy, August 19, 2008

Coalition for Genetic Fairness Celebrates Passage of GINA, Honors GINA Champions, July 23, 2008

Genetic Alliance Honors Advocate and Industry Leaders in Genetics, July 23, 2008

Genetic Alliance Announces ‘Family Health History’ Grant Award Recipients, June 2, 2008

Francis Collins Announces his Departure from NGHRI, May 28, 2008

President Bush Signs Landmark Genetic Nondiscrimination Information Act Into Law, May 21, 2008

U.S. Congress Passes Genetic Nondiscrimination Act, May 1, 2008

Senate Passes Historic Bill on Genetic Information Nondiscrimination, April 23, 2008


Consumer Taskforce on Newborn Screening, September 17, 2007

Genetic Alliance Establishes the National Consumer Center for Genetics Resources and Services, September 5, 2007

Federal Agency Rejects Enhanced Oversight of Genetic Tests, Places, Cost Considerations above Public Health Concerns, August 30, 2007

Understanding Genetics: A New England Guide for Patients and Health Professionals, July 19, 2007

Amelia Chappelle joins Genetic Alliance as the Assistant Director of Genetic Resources & Services, June 14, 2007

Genetic Alliance Awarded Two Newborn Screening Grants, May 24, 2007

Sharon Terry receives Award for Patient Service at the University of North Carolina at Chapel Hill, May 19, 2007

Heather Ferguson joins Genetic Alliance as the Associate Director of Genetic Resources & Services, May 15, 2007

Genetic Alliance Launches Robust Repository Service, May 7, 2007

Genetic Alliance Introduces New Web Resource for Accessing Information on Genetic Diseases, April 30, 2007

Coalition for Genetic Fairness Applauds US House of Representatives for Passing Genetic Information Nondiscrimination Act, April 25, 2007

Coalition for Genetic Fairness Applauds House for Holding Hearing, January 30, 2007


Genetic Alliance Releases “Understanding Genetics: A Guide for Patients and Health Professionals”, May 31, 2006

Genetic Alliance and Partners to Engage Communities in Family Health History Collection, May 22, 2006

Over 160 Medicines to Treat Rare Diseases Approved in Last Decade, April 20, 2006


Genetic Alliance’s Sharon Terry Receives Honorary Doctorate from Iona College, November 13, 2005

Genetic Alliance Awarded Single Gene Resources Network Cooperative Agreement, October 3, 2005


Genetic Alliance Launches BioBank, October 27, 2004

Genetic Alliance Conference Strengthens Advocates, August 18, 2004

Sharon Terry Announced CEO of Genetic Alliance, 2004

Iona College: From Here to the Genome And Back, 2004


Newborn Screening Statement, 2002

Genetic Discrimination in Health Insurance and Employment, 2001

Hearing on Human Cloning, 2001

Nondiscrimination Protections will Advance Research and Translation Efforts, 2000

Genetic Discrimination and Privacy of Medical Records, 1998

Letter to the Washington Post, March 1997

Visit to White House, 1997

Advances in Genetic Research and Technologies: Challenges for Public Policy, 1996


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