The HPS Network and Boston-based Broad Institute have formed a partnership to make genetic testing more available to families impacted by Hermansky-Pudlak Syndrome. The Institute is willing to provide free gene type testing to families in need, or who have not yet been able to find the gene causing their HPS. Currently, the service is only available to families in the United States and Puerto Rico.
“Wanting to know your gene type is a personal choice,” says HPS Network Vice President and Director of Communications Heather Kirkwood, “But there are some very good reasons to know. There can be a lot of anxiety wondering if you have a type of HPS that causes lung disease. Clinical trials usually require that you know your gene type to participate. So, we are ecstatic about this opportunity.”
The HPS Network and Broad Institute are also hoping to partner on a project to calculate the prevalence of HPS more accurately in the general population in the United States. Currently, numbers are only available for Puerto Rico.
The Broad Institute of the Massachusetts Institute of Technology, and Harvard, was launched in 2004 to improve human health by using genomics to advance our understanding of the biology and treatment of human diseases and to help lay the groundwork for a new generation of therapies.