Advocacy, Education & Empowerment

First Feature

First-ever Treatment for Progeria Discovered!!

The clinical trial, completed at Boston only six years after scientists identified the cause of Progeria, showed that the FTI lonafarnib had a positive effect on weight gain, hearing, bone health and, most importantly, cardiovascular health.

Read the press release here!

Infographic

Celebrate your baby in September!

September is National Newborn Screening Awareness month and marks the one year anniversary of Baby's First Test.

Learn all the facts about newborn screening and share your story at www.BabysFirstTest.org

BioBank

Genetic Alliance wants to hear from you about your experience with biobanks

If you are a current biobank participant and or may be interested in participating in biobanking in the future, take the survey here!

Sanofi

Genetic Alliance is one of the 4 finalists of the Sanofi Collaborate|Activate challenge!

The Innovation Challenge is designed to foster collaboration between non-profit organizations with a common purpose and promote sharing of complementary resources to accelerate the impact on people's health.

Learn more about the challenge here

Follow @geneticalliance

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Network

Meet Your Neighbors

The Association of Public Health Laboratories (APHL) works in collaboration with other arms of the nation’s public health system to protect the public against diseases and other health hazards. APHL provides clinical diagnostic testing, disease surveillance, environmental and radiological testing, emergency response support, applied research, laboratory training and other essential services to the communities they serve. When health risks emerge or re-emerge, laboratories in public health analyze the threat, provide the answers needed to mount an effective response and act to protect the public. In one way or another, their work affects the life of every American.

Become a "neighbor"!
View our neighbor archive

Policy

Your Data Are Not a Product

A new, experimental bioethics protocol, the Portable Legal Consent for Common Genomics Research (PLC-GCR), provides a mechanism for researchers to use existing medical and genomic data from research participants in their experiments. Data collected in experiments involving people are tightly controlled, and access is highly restricted due to ethical and legal concerns.

The new PLC-GCR protocol attempts to shift the paradigm by allowing informed and obliging volunteers to provide their genomic and medical data to be publicly available for use by other researchers. Any data in the PLC-GCR database will be anonymized, and researchers who use the data must adhere to strict confidentiality principles to protect the identities of the volunteers.

Genetic Alliance will be using the PLC-GCR for the THAT’S MY DATA! project launching in late April – stay tuned!

Sage Bionetworks Congress

The 3rd Annual Sage Commons Congress, Building Better Models of Disease Together, was held April 20-21 in San Francisco. The Congress explored how early investments in technical and legal data sharing platforms are beginning to pay off in faster science, increased patient engagement, and disruptive projects that can shake up the entire pharmaceutical industry.

The Congress program included deep dives into the Synapse technical platform and Portable Legal Consent systems that together make data about individual research participants the key to large-scale disease research and the open science movement.

View all of the Congress sessions and Congress Unplugged!

New Federal Agency Helps the Aged and Disabled

The Obama Administration has created a new agency within the U.S. Department of Health and Human Services (HHS), the Administration for Community Living (ACL). This agency is tasked with aiding seniors and people with disabilities living in a community. The new agency ties together three other federal agencies, the Administration on Aging, the Office on Disability, and the Administration on Developmental Disabilities.

The ACL seeks to encourage better access to support, and targets initiatives towards groups with specific disabilities. HHS hopes that the ACL will enhance the lives of those with disabilities and provide them with tools to get the help they need in healthcare, housing, employment, and education. ACL will also help them to participate and cultivate relationships with the community.

US Translational-Research Center Fund

The US National Center for Advancing Translational Sciences (NCATS) has awarded 17 grants to create artificial organs for drug screening. These complex mini-machines are generally the size of a microscope slide or smaller, and are often connected to all sorts of tubes and wires to help to mimic human physiology. A lung on a chip, for example, puts blood-vessel cells on one side of a membrane and lung-tissue cells on the other. Tiny pumps and vacuums model breathing and blood flow.