Welcome to the first edition of the European Haemophilia Consortium’s (EHC) periodic review of novel treatments in haemophilia and other bleeding disorders.
The purpose of this newsletter is primarily to help educate EHC National Member Organisations (NMOs) and help them to provide their members and caregivers with a general overview and understanding of the rapidly evolving landscape of medicinal product development in rare bleeding disorders. The EHC encourages its NMOs to use and adapt this newsletter to their national needs but takes no responsibility for any changes.
The information provided in this newsletter covers recent major developments and is divided by specific type of disorder for which there is an update to report. This newsletter will be updated periodically.
The information provided in this newsletter was compiled from multiple sources, including presentations at recent scientific meetings (e.g. EHC New Technologies workshop, EAHAD Congress), websites (e.g. www.clinicaltrials.gov) and by writing directly to pharmaceutical companies. It was then redrafted and presented in easy-to-understand language. For this we give special thanks and recognition to Declan Noone.
The EHC is also grateful to the New Products Working Group, which has overseen the content and production of this newsletter. Its members include:
- Asst Prof Brian O’Mahony, EHC President
- Dr Radoslaw Kaczmarek, EHC Steering Committee member
- Prof Mike Makris, EHC Medical Advisory Group (MAG) member
- Prof Flora Peyvandi, EHC Medical Advisory Group (MAG) member
- Dr Dan Hart, EHC Medical and Scientific Advisory Group (MASAG) member
- Mariëtte Driessens, EHC volunteer
- Uwe Schlenkrich, EHC volunteer
The EHC greatly welcomes all treatment developments that may benefit patients in the future. The EHC takes no position on any product type or class reported in this newsletter.
We hope that the information provided herein is useful and are available for any questions.
You can access the newsletter here.