Notes from the Community, November 2019

Notes from the Community

Update from the Hemophilia Alliance Foundation

A friendly reminder that the Hemophilia Alliance Foundation will be posting its 2020 Grant Guidance online at https://hemophiliaalliancefoundation.org on December 5, 2019! Since 2009, the Alliance Foundation has awarded over $4 million to help 140+ chapters, treatment centers, and national community organizations build capacity and support and expand their missions. Successful applications for both projects and patient assistance programs should demonstrate clear, measurable outcomes and a strong commitment to the bleeding disorders community. Hear from one of our grant recipients below:

"The Virginia Hemophilia Foundation (VHF) is stronger and well-positioned for future success because of the ongoing support of the Hemophilia Alliance Foundation. With their support, VHF has been able to enhance the education that is offered to constituents, ensure that board members are trained and skilled to lead the organization, guarantee that equipment and supplies are available to increase awareness of inherited bleeding disorders, and provide qualified facilitators to lead strategic planning sessions." – Kelly Waters, Executive Director, Virginia Hemophilia Foundation, 2019

Organizations interested in submitting applications should review the Grant Guidance thoroughly before finalizing their applications as there are several changes to this year’s application. Applications must now be submitted electronically via a SUBMIT button at the bottom of the application. This new system will allow for applicants to immediately receive an automated acknowledgement of receipt of their application. Please note that applications submitted as an attachment to an email will not be considered.

If your organization—or an organization you know—is interested in applying but feels like it does not have the capacity or expertise to do so, please reach out to us at info@hemophiliaalliancefoundation.org! We can direct you to additional resources that will help you submit a strong application.

Also in this Issue…

Notes from Joe
· Back to the Future

Payer Update
· Patient Data: Who Owns It, How Do You Use It, and Why Should You Care?

Washington Update

Legal Update
· Supporting Patients while Steering Clear of Fraud

Alliance Update
· Alliance Operations Update
· 2020 Meeting Schedule


Team Alliance Contact Information

We work for you! Please don’t hesitate to contact any of us with any questions or concerns:

Name Email Phone
Joe Pugliese joe@hemoalliance.org 215-439-7173
Sean Singh sean@hemoalliance.org 727-388-7326
Jeff Blake jeff@hemoalliance.org 317-657-5913
Jeff Amond amond@hemoalliance.org 608-206-3132
Johanna Gray, MPA jgray@dc-crd.com 202-484-1100
Elizabeth Karan ekaran@feldsmantucker.com 202-466-8960
Roland P. Lamy, Jr. roland@hemoalliance.org 603-491-0853
Dr. George L. Oestrich, Pharm.D., MPA george@gloetal.com 573-230-7075
Ellen Riker eriker@dc-crd.com 202-484-1100
Mark Plencner mark@hemoalliance.org 701-318-2910
Michael B. Glomb MGlomb@ftlf.com 202-466-8960
Theresa Parker theresa@hemoalliance.org
Karen Bowe
Joel Bellucci webmaster@hemoalliance.org 727-504-0491