Cure AHC is Partnering with RARE-X to Revolutionize Your Patient Data.

We’ve been working hard to find a cure for Alternating Hemiplegia of Childhood, it’s our mission. As we get closer to clinical trials for therapeutic interventions harnessing patient data will be a key part of our success. Right now your data is locked away in different places (your doctor’s office, insurance company, pharmacy, and research studies you’ve been a part of), making it difficult to use for future clinical trials. That’s why we’ve partnered with RARE-X to give you control over your health data and give you a chance to participate in research.

What does RARE-X do?

RARE-X is…

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 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, 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 AHC community.  

Our goal is to make the process as easy as possible for you. By clicking on the link below, you can learn more about this one-of-a-kind Data Collection Program and begin the first step in making your patient information available to researchers.