Notes from the Community, October 2022

Notes from the Community

Illinois Ultra-Rare Bleeding Disorders Event a Success
by Bob Robinson, Executive Director of the Bleeding Disorders Alliance Illinois (BDAI)

The Bleeding Disorders Alliance Illinois (BDAI) brought together an amazing group of more than 50 people with Ultra-Rare Bleeding Disorders for the Ultra-Rare Bleeding Disorders Community Meet-Up on the weekend of September 9 – 11. Thanks to generous grants from Global Genes and the Hemophilia Alliance – this event – one of the first of its kind, developed from work BDAI is doing to address barriers to care for people with inherited bleeding disorders.

This activity was an important step in identifying and addressing the significant challenges people with URBD’s face compared to the broader bleeding disorders community. It helped build a healthier and stronger experience for all involved giving participants the opportunity to connect with others with the same or similar ultra-rare bleeding disorders and spend time with hematologists from federally funded hemophilia treatment centers, and other professionals who addressed questions and assisted in creating a clear path to addressing on-going healthcare concerns.

More than a dozen different rare disorders were represented. Several participants had never been to an advocacy event with the bleeding disorders community ever in their lives. This was such a great start to bringing people together ending the isolation and loneliness caused by being RARE! This group of brave individuals committed to keeping this program going pledging to create a Bill of Rights for People with URBDs and started planning a follow-up event to learn how to be Ambassadors to spread the word to more people with these conditions.

In addition to our sponsors—Global Genes & the Hemophilia Alliance— we also thank our Exhibitors—the Bleeding & Clotting Disorders Institute, BPL Laboratories, HemaBiologics, Novo Nordisk, Optum and Rush Hemophilia and Thrombophilia Center. Finally, we share this success with our speakers: Lisa Boggio, MD; Stacey J. Feuer, PsyD, MLD; Iftikhar Haider, PhD; Maria Santanella, MSN, RN-BC, CPHON; and Michael Tarantino, MD.

For more information about this event and to be involved in our future activities for the ultra-rare bleeding disorders community contact: Bob Robinson, Executive Director, BDAI— or 708.254.3309

Also in this Issue…

Also in this Issue…

Notes from Joe
· 340B Blues

Alliance Update
· Meet Jennifer Anders!
· Finding Talent Within the Bleeding Disorders Community!
· Update re: Re-Accreditation of Gene Therapy Modules Developed by Partners

Legal Update
· How to Compliantly Increase Visibility of HTCs and the Comprehensive Care Model

Washington Update
· Webinar on Implementation of the Hemophilia Skilled Nursing Facility Access Act Available

Payer Update
· Payer Trends: What You Need to Know

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