Message from the Advisory Council Chair
As a person with severe hemophilia A and all the complications that go along with a man of my generation, I am aware of the challenges our community faces as a patient. As Past President of local and national organizations, I am equally aware of the challenges we face in this ever-changing landscape of healthcare and advocacy. As a community we have fought long and hard to make living with a bleeding disorder as easy as possible. We fought for safer products and choice of products. We insist that product is covered by insurance. While patients and healthcare professionals enjoy these victories in some states, most patients and healthcare providers in other states do not. Insurance companies are dictating their care, access to care and product choice.
It has been an honor for me to be one of the original members of the CSL Behring Foundation. Over the years I am very proud of the grants we have funded, totaling over 6 million dollars. The Foundation has assisted patient groups in areas of advocacy as well as outreach. Disabled Adventure Outfitters of California were able to take a group of older persons with a bleeding disorder on a white water weekend outing, providing new friendships, independence and a feeling of accomplishment. The Foundation's Unrestricted grant enabled Texas Central Hemophilia Association to become a great advocate for their community. Our grants to HTC's have funded animations, videos, research and education. Yale Hemophilia Treatment Center combined video and education by a monthly video grand rounds designed to facilitate the exchange of current information regarding the care of people with bleeding disorders among healthcare professionals at eight HTC's in the New England area. Puget Sound Blood Center designed a research study to determine if there is a link between the genes of people with severe hemophilia A who develop inhibitors and their response to factor VIII replacement therapy.
These are some of the creative and collaborative grants the council seeks to fund.
If you are affiliated with a hemophilia treatment center or non-profit organization such as a hemophilia foundation, chapter, or association, or if you are a healthcare professional dedicated to the treatment of people with bleeding disorders, I encourage you to apply for a grant.
Sincerely,
Richard Vogel,
Advisory Council Chair, CSL Behring Foundation
Immediate Past President, Hemophilia Association of New Jersey
Past President, Hemophilia Federation of America