Hemo Alliance Newsletters

Notes from the Community, Spring 2022

Notes from the Community

Hemophilia Alliance Foundation Awards 2022 Project/Patient Assistance Grants!

Thank you to all of the organizations that applied for a Hemophilia Alliance Foundation (HAF) Project/Patient Assistance Grant! This year, we are proud to announce that we awarded over $500,000 to 58 organizations in the inherited bleeding and thrombotic disorders community. Congratulations to all of our recipients!

These Project/Patient Assistance Grants will directly support essential patient-centered programs in the community, including educational and advocacy events, patient assistance programs, travel grants to national and local meetings, and much more. We are thrilled to see the creativity and collaboration in many of the grant applications.

If you missed this grant cycle, please remember to mark your calendars for early December, when the Project/Patient Assistance Grant applications are released annually. Applications are due at the end of January. For those who are interested in applying for HAF’s Innovation Grant (up to $50,000), applications will be available in April 2022. More information will be announced soon.

Want to be notified when the next HAF grant application cycle is open? Please click here to add your name and email address so that we can add you to the HAF listserv. If you would like to make sure that you, or someone else in your organization, is part of our listserv, then please make sure they complete this form!

Any feedback for us? We continue to try to improve our grant guidance and application form. We’d love to hear your feedback. Please fill out this anonymous survey by clicking here.


World Federation of Hemophilia: Global Reach. Local Impact.
– by Jennifer Laliberté – WFH USA National Director

Since 1963, we have worked to improve access to care for all people living with an inherited bleeding disorder, regardless of where they live. In collaboration with our national member organizations and healthcare providers in 147 countries, we support sustainable care by building capacity for diagnosis, treatment, and advocacy.

The WFH Guidelines for the Management of Hemophilia have been vital to achieving those objectives: cited over 1,000 times, the second edition remains our most widely accessed resource. The new edition published last August provides important updates and additions, including over 300 evidence-based recommendations to guide best practice. To further the promotion and implementation of these recommendations – and thanks to the support of the Hemophilia Alliance — we will also be releasing slides decks, narrated videos, and chapter snapshots to highlight key learnings. Keep on the lookout for these soon-to-be-released resources on the WFH website.

The World Bleeding Disorders Registry (WBDR) is another valuable tool to support clinical care and advocacy around the world. First launched in 2018, the registry now contains clinical data on over 7,400 people with hemophilia in 39 countries, and has provided communities in countries like Bangladesh and Kyrgyzstan with their first ever national registry. Upcoming plans include developing myWBDR, an app developed in collaboration with PROBE that will allow for easier collection of patient-reported outcomes.

2021 will see the launch of our ground-breaking Gene Therapy Registry (GTR). As we enter a new treatment era, this important initiative will help determine the long-term safety of gene therapies in people with hemophilia, with data collected either directly via the HTC or through linkages with existing national registries like ATHN. We look forward to sharing more information in the months ahead.

As members of our global community, you are an integral part of our vision of Treatment for All. We hope you will join us as we celebrate the strength and solidarity of our bleeding disorders family on World Hemophilia Day this April 17th. Encourage your community to join us on social media using the hashtags #WHD2021 and #WorldHemophiliaDay, or consider making a gift to support the WFH’s global mission at give.wfh.org/give-usa.

To learn more about our work and how you can get involved, contact us at info@wfhusa.org.

Also in this Issue…

Notes from Joe
· “If not us, who? If not now, when?” – John F. Kennedy

Legal Update
· 340B Program Developments

Washington Update
· Recap of the Alliance Hill Day

Payer Update
· HANS Signs 6th Payer Contract!

Alliance Update
· Alliance Seeking Board Nominations
· Recap of the Linda Gammage Social Work Conference

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
Jeff Blake jeff@hemoalliance.org 317-657-5913
Jennifer Borrillo, MSW, LCSW, MBA borrillo@hemoalliance.org 504-376-5282
Heidi Lane, PT, DPT, PCS heidi@hemoalliance.org 435-659-1230
Angela Blue, MBA angela@hemoalliance.org 651-308-3902
Karen Bowe-Hause karen@hemoalliance.org 717-571-0266
Jazzmine Brown, MBA, MSW, LCSW jazzmine@hemoalliance.org 770-570-2649
Ashley Castello, MEd ashley@hemoalliance.org 225-266-5062
Zack Duffy zack@hemoalliance.org 503-804-2581
Michael B. Glomb MGlomb@ftlf.com 202-466-8960
Johanna Gray, MPA jgray@artemispolicygroup.com 703-304-8111
Kiet Huynh kiet@hemoalliance.org 917-362-1382
Elizabeth Karan elizabeth@karanlegalgroup.com 612-202-3240
Kollet Koulianos, MBA kollet@hemoalliance.org 309-397-8431
Roland P. Lamy, Jr. roland@hemoalliance.org 603-491-0853
Julie Lichterman julie@hemoalliance.org 941-779-5971
Dr. George L. Oestreich, Pharm.D., MPA george@gloetal.com 573-230-7075
Theresa Parker theresa@hemoalliance.org 727-688-2568
Mark Plencner mark@hemoalliance.org 701-318-2910
Ellen Riker eriker@artemispolicygroup.com 202-257-6670