If you are a HCP and would like to visit the global Hemophilia website, please confirm this by pressing the button below.
This website contains information based on the Summary of Product Characteristics (SPC), as approved by the European Commission on Jivi (damoctog alfa pegol), Kovaltry (octocog alfa) and Kogenate FS (octocog alfa). It is intended to provide information to an international audience. In countries outside the EU, the local Product Information applies.
Patient advocates have a unique and direct insight into the needs and challenges of the hemophilia community.
Bayer works in partnership with the Global Blood Disorders Foundation which is a non-profit 501(c) 3 organization headquartered in the USA. The foundation is committed to improving health care through educational venues, leadership skills training and promoting advocacy as a tool to promote change in the bleeding disorders community in the United States and globally. It serves to accomplish its mission by:
Providing educational opportunities through programs, conferences, meetings and seminars offered to the bleeding disorders community and healthcare providers from across the comprehensive care team.
• Facilitating the development of educational materials to meet the needs of the bleeding disorders communities worldwide.
• Providing a path to stronger advocating by healthcare stakeholders in the bleeding disorder communities globally through leadership development and skills training.
• The organization works within Hemophilia A, Hemophilia B, Von Willebrand Disease and Other Bleeding Disorders.
• Its major programs include Step Up Reach Out (SURO) and A Fellowship for Integrating Responsible Mentors (AFFIRM).
These programs are funded through a sponsorship by Bayer. To learn more or to apply please click the link below.
Step Up Reach Out (SURO) is a 1-year international program fostering the leadership potential of young men aged 21-25. Nominated by their local NMO, applicants are selected from a global audience and come together to learn and lead.
It helps them understand the issues facing the global hemophilia community and to connect with other young leaders.
Adult Fellowship for Integrating Responsible Mentors (AFFIRM) is an international advocacy development program for advocates aged 26–38.
Recently expanded to women from the advocacy world in hemophilia, this program is unique to the industry and hones the skill set of a more sophisticated advocate. This 2-year program develops fellows’ leadership skills to help bring better care, programs, and treatment to their community.
Hemophilia Advocacy Advisors Board (HAAB) is a group of leading patient advocates dedicated to identifying unmet needs in the bleeding disorders community.
The International Hemophilia Access Strategy Council (IHASC) is a group of experts, advocates, and health economists who seek solutions to today’s changing access landscape. A primary goal for this group is to help shape the market to be receptive to ensuring access to innovation globally.
There are many independent organizations and websites that provide advice and support for people with hemophilia and their carers. Here are some recommendations you may want to make your patients aware of.
The World Federation of Hemophilia (WFH) is committed to providing global leadership to improve and sustain care for people with inherited bleeding disorders, including hemophilia. It offers a wide range of resources, support, and links to national organizations.
Speaking Frankly is a daring, distinctive website that aspires to serve as a candid, trusted resource on real issues of concern to teenagers and young adults with hemophilia worldwide.
Supported by Bayer, this website is led by a team of writers and editors who are members and alumni of the HemLEAD programs. All content is developed by members of the community for the community.
© 2020 Bayer AG
This website is intended to provide information to an international audience outside the USA and UK
Last updated on 02/11/2020