Rare Disease Report


"During the whole trek, Chris asked the hemophilia community and others to show their support by sponsoring a child or donating to his Nepal fund at Save One Life. Nearly 80 sponsorship pledges were made—a record number—and Chris’s original fundraising amount, $8,848 (the altitude of Everest in meters) was surpassed by 150%. The $13,000 raised will be used to support reconstruction of homes and income generating activities for the members of the Nepal Hemophilia Society."

Guest post by Martha Hopewell Published Online: Friday, Jun 30, 2017

Guest post by Martha Hopewell
Published Online: Friday, Jun 30, 2017

Rare Disease Report is a website and weekly e-newsletter that offers an independent voice for the Rare Disease Community. It strives to bring together medical, scientific, investment, regulatory, and advocate professionals interested in rare diseases and orphan drugs. It is an honor to be featured in their publication, and to continue to advocate for our bleeding disorders community. Check out the article here.