Notes from the Community, October 2019

NHF's Bleeding Disorders Conference Brings the Community Together

At the Opening Session of the National Hemophilia Foundation’s (NHF) Bleeding Disorders Conference, October 3-5 in Anaheim, CA, outgoing CEO Val D. Bias spoke of the importance of speaking up in advance of the changes in treatment paradigms and access to care. Making your voice heard, said Bias, “keeps our community together.”

After a short video tribute that highlighted Bias's lifetime of service to the bleeding disorders community, Bias thanked the attendees for trusting in his vision and leadership during his eleven years of leading NHF, and for stories they shared with him, which, he said, "gave us the information we needed to plan for the future."

Understanding the experiences of living with a bleeding disorder is central to a new NHF program that Bias introduced at the conference, MyBDC. MyBDC is a community-powered registry that aims to capture the experiences of people living with a bleeding disorder and their family members and caregivers over a long period of time. The information will allow researchers to gain a better understanding of how a bleeding disorder affects individuals and families – directly from the people themselves. “The story of the bleeding disorders community needs to be written by us, not for us,” Bias told attendees.

NHF's Bleeding Disorders Conference is NHF's signature event, and brings all members of the bleeding disorders community together. Affected individuals and their family members, NHF chapter leaders and staff, physicians and researchers, nurses, social workers, and physical therapists all gather to gain valuable education, network, and receive support.

The conference is divided into twelve tracks, including the tracks for medical professionals. Affected family members can find sessions tailored specifically to them, including von Willebrand disease; sessions for adult men, teens, women with bleeding disorders, spouses and partners, parents and caregivers, and rare bleeding disorders.

The conference concluded with NHF’s Award Ceremony, which paid homage to the medical professionals, chapter leaders, and volunteers who do exceptional work to benefit the community. And at NHF Final Night Event, attendees gathered to eat, dance, and celebrate together.

NHF is grateful to Platinum Sponsors Bayer HealthCare, CSL Behring, Genentech, Novo Nordisk, Pfizer Hemophilia, Sanofi Genzyme, and Takeda; and Bronze Sponsors BioMarin, Hemabiologics, and Octopharma for their invaluable support.

HTRS Announces Second Research Colloquium

The Hemostasis and Thrombosis Research Society (HTRS) will hold its second biennial HTRS Research Colloquium (www.2020rc.org) from April 21-22, 2020 at the Hyatt Regency Chicago, just prior to the THSNA 2020 Summit. The Colloquium, titled “Developing a Sustainable Career in Hemostasis and Thrombosis,” is a 1.5-day education and career development event for a combined audience of basic scientists/translational researchers and clinicians/physician-scientists interested in non-malignant hematology.

The Colloquium targets early-stage investigators (MDs, DOs, MD/PhDs, and PhDs) who have completed fellowship and/or postdoctoral training and are working to build sustainable academic research careers in hemostasis and thrombosis. Third- or fourth-year medical fellows and/or postdocs may apply to attend if they can demonstrate an established commitment to building a research career in hemostasis or thrombosis upon completion of training. Early-stage investigators are encouraged to apply for Travel Awards by January 24, 2020. Travel Award recipients who wish to stay on in Chicago after the Colloquium to attend the THSNA 2020 Summit can also apply to have their extended lodging fees reimbursed by HTRS.

HTRS (www.htrs.org) is the leading North American professional society dedicated to research, mentoring, workforce development, and continuing medical education for physicians, investigators, and all health care professionals interested in advancing care for people with hemophilia and other hemostatic and thrombotic disorders. With the generous support of organizations like The Hemophilia Alliance, a Gold Level Supporter of the 2020 Colloquium, HTRS can offer events like this that bridge the traditional divide from “bench to bedside” and inspire innovative, collaborative research in our field. Connecting early-stage investigators directly to a North American network of experienced mentors, peers, and other essential collaborators supports the growth of a healthy workforce for U.S. hemophilia and thrombosis treatment centers now and in the future.

For more information about the Colloquium or to register or apply for a Travel Award, please visit the 2020 HTRS Research Colloquium website (www.2020rc.org) or contact HTRS (htrs@versiti.org).

Update from the Hemophilia Alliance Foundation

The Hemophilia Alliance Foundation will be posting its 2020 Grant Guidance on its website on December 1, 2019. Since 2009 the Alliance Foundation has been making a positive difference in the community, helping chapters, centers, and national community organizations build capacity and support and expand their missions. 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. The guidance for 2020 may be found at the Foundation’s website on December 1. 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.

Also in this Issue…

Notes from Joe
· The More Things Change . . .

Alliance Update
· Our Library Has a Little of Everything
· Alliance Seeking Board Nominations

Payer Update
· Know Your Patients and Their Insurance


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