Growing Stronger is partnering with RARE-X, a Global Genes program, to build a Data Collection Program for the achondroplasia community. When members of the achondroplasia community participate, you will help to accelerate research and development of new drugs, devices, and other therapies.
The main goal of this data collection program is to:
• Inform researchers how achondroplasia changes over time
• Enable better data to use in clinical trials
• Give patients the opportunity to participate in clinical trials
• Reduce the time it takes to study new medicines
• Speed up the time it takes to get treatments to patients
• Enable the use of data as a placebo (instead of actual patients) in a clinical trial
RARE-X is a 501(c)(3) nonprofit created by leaders in the fields of patient advocacy, medical research, biopharma, and technology.
RARE- X is piloting a series of demonstration projects, in partnership with rare disease communities, to apply technology proven in other large-scale public health and genomic data-sharing initiatives to support researchers developing treatments for rare disease patients.
RARE-X is leveraging existing technology powered by the Broad Institute of MIT and Harvard and other technology partners, which will support patients (in data collection, structuring, and responsible sharing), clinicians (in accelerating diagnosis and improving and tracking health outcomes), researchers and biopharma (with the data they need to identify, develop and track the impact of breakthrough treatments and cures).
Since RARE-X is a nonprofit, there is no cost to you or the achondroplasia and skeletal dysplasia community. Our goal is to make the process as easy as possible for YOU.