RDLA and Global Genes Urge Patients to Share Their Story with Congress


Deadline:  February 12, 2014    We are excited to partner with Rare Disease Legislative Advocates  for their Annual Legislative Conference and Lobby Day on February 27, 2014.   If you are unable to join us in Washington DC, but wish to take part in our lobby […]

Forbes Rates 16 Pharma Companies for 2013


How’d Big Pharma do this year? Very well. I decided to give every drug company with a market capitalization greater than $50 billion a letter grade, just like in school. The basis for the grades: I started with stock performance as a basic metric, and […]

Top 50 Thought-Leaders in Orphan Drugs and Rare Disease: New Report


This report, created by Terrapinn and the World Orphan Drug Conference recognizes the top 50 thought-leaders in orphan drugs and rare disease. Chris Austin, Director, National Center for Advancing Translational Sciences, NIH In September 2012, Christopher P. Austin, M.D., was appointed the first permanent director of […]

NYSCF Partners NIH to Generate Stem Cell for Treating Rare Diseases


In what is anticipated to be a major step forward for rare disease research, The New York Stem Cell Foundation (NYSCF) Research Institute is partnering with the National Institutes of Health (NIH) Undiagnosed Disease Program (UDP). NYSCF scientists will generate stem cell lines from 100 patients in […]

Questions on Caregiving? Ask the Experts Today!


Global Genes  | RARE Project will be hosting a webinar this week on November 21st at 11:00AM PT (90M) and we’d like to invite YOU to participate in the conversation. The topic of the webinar is on caregiving: “Taking Care of Yourself While Taking Care of Your Loved […]

FDA Sets Up New Rare Disease Research Fund


The US Food and Drug Administration (FDA) is to support the research of treatment for rare diseases through a new $14m fund. The money will support 15 research projects that are investigating new ways to tackle rare diseases, defined in the US as conditions that affect […]

The Global Genes | Rare Project Named Top-Rated NonProfit 2013 by GreatNonProfits


GreatNonprofits is the leading developer of tools that allow people to find, review and share information about great– and perhaps not yet great– nonprofits and charities. Thanks to the reviews of the rare disease community, Global Genes was named a Top-Rated NonProfit for 2013 by […]