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 […]

Chiesi Group Acquires Zymenex, Enters Rare Disease Market


Chiesi Group will acquire Zymenex Holding and its related companies from its venture capital investor-owner Sunstone Capital for an undisclosed price, in a deal that marks Chiesi’s entrance into the rare disease space and, according to the company, provides an opportunity to access high-potential markets. Founded in […]

Rep. Herrera Beutler’s Baby Defies Odds of Usually-Fatal Condition of Potter’s Syndrome

Potter's Syndrome

Before Rep. Jaime Herrera Beutler’s baby was even born, the odds seemed against her surviving. She hadn’t developed kidneys, which meant she didn’t produce urine which is the main ingredient of amniotic fluid. Without amniotic fluid, a baby’s lungs can’t develop properly. But today, little […]

Rare Disease White Paper Open for Public Comment


By EveryLife Foundation for Rare Diseases NOVATO, CALIF., JUNE 25, 2013 — /PRNewswire-USNewswire/ — The EveryLife Foundation for Rare Diseases assembled a working group drawn from industry and patient organizations to develop a white paper to address the critical scientific issues that would govern a successful […]

Global Genes Gets the Scoop on New Documentary: Parenting a Child with Life-Limiting Illness

One couple expands on coping with a life-limiting condition.

A new documentary, Parenting a Child with Life-Limiting Illness, is sure to resonate with parents of children with rare and genetic disease. On Thursday, June 27th the film screening will take place at Genzyme Center in Cambridge, MA.  This film was produced by National Tay-Sachs & Allied […]