Emmes, MedGenome to Speed Up Genomics-based Breakthrough Therapies
A partnership between Emmes and MedGenome seeks to accelerate development of genomics-powered therapies for people with rare diseases,…
Articles by Mary Chapman
Ameritas Honors Hemophila A Advocate With $20K Grant to NHF
Jim Christensen Jr., a hemophilia A patient who has supported the National Hemophilia Foundation (NHF) for more than three…
Free Online Program to Train Global Advocates for Bleeding Disorders
An online academic training program has been launched globally for people interested advocating for bleeding disorders care and treatment in…
10 Families in UK Invited to Try for Free, Daylong ‘Camp in the Cloud’
Ten U.K. families who are members of the Haemophilia Society have the chance to enjoy a free, virtual Camp in the…
Sept. 18 is ‘Unite Day’ for Bleeding Disorders Community
Bleeding disorder patients and their supporters are encouraged to participate on Sept. 18 in Unite Day, a national virtual event…
NHF, InSourceRx Offering Prescription Savings
InSourceRx is partnering with the National Hemophilia Foundation (NHF) to help those with inheritable blood disorders, such as…
Centogene Sets Mission to Cure 100 Rare Diseases in Next 10 Years
At its first virtual investor event, biotech company Centogene set a bold mission: to cure 100 rare diseases…
EveryLife Introduces First of Kind ‘Roadmap’ to ICD Codes
To help patient advocacy leaders and their partners better understand how global health statistics codes — known as ICD codes…
Get Ready for NORD’s Patient and Family Forum, Set for June 26-27
Those who wish to gain practical tools for living optimally with rare diseases are encouraged to attend the annual…
‘Awesome’ Book Contest Invites Hem B Patients to Share Their Story
As part of a Coalition for Hemophilia B contest, people with hemophilia B, their siblings, and caregivers are  invited…