Bleeding Disorder News # 134: Women's Conference, Patient Advocacy and catching up after the wedding of one of our own!

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Bleeding? That's what we do!

Hi all, Fall is upon us! I've been nesting with cozy blankets, hot tea, and fall foliage. (Note: As a New Englander, I am contractually obligated to add layers but not turn on the heat. IYKYK.) The CHES team has been particularly busy this fall. I just returned from attending the National Women's Conference hosted by the Hemophilia Foundation of Michigan. It was such a wonderful opportunity to learn, connect, and share. I appreciate the invitation to speak about CHES during the National Organizations Update and am particularly grateful to Shari Luckey and Kaite Scott for the invitation to participate. Eric Lowe, CHES's COO, was in Washington, DC representing CHES at the Milken Institute's Patient Advocacy Forum in partnership with Sanofi. Eric represented CHES at this far reaching and important advocacy event. Janet Brewer, Director Emerita, went to the Foundation for Women and Girls with Blood Disorders to share information about CHES with the over 300+ HCP providers who attended this critical event.   In other news, Joan Ward, the glue who keeps the CHES team moving and grooving, has been hard at work behind the scenes to set up venues and dates for 2027- wild but true! And last but certainly not least, our very own Chris Brewer is getting married on 10/17/26. We are thrilled to celebrate Chris's wedding to his wonderful fiance, Gabby. Congratulations! Happy Fall! Best, Heather One Drop 2026 in Tampa is fast approaching! Are you affected by an ultra-rare bleeding disorder? This conference is for you! A list of Ultra-Rare conditions can be found at https://ches.education/one-drop Applications close on 10/25- APPLY TODAY! CHES remains dedicated to offering high quality education and connections with ultra-rares, women and the Inhibitor Community.    CHES Board Applications are open! CHES Foundation, Inc is looking for additional engaged, enthusiastic working board members to support our programs and services that our families have come to trust. Board members are asked to participate in a minimum of 3-4 quarterly conference calls per year, and up to 3-4 standing monthly committee meetings, which occur outside of regular board meetings (this can happen by phone or internet). Interested in making this commitment to CHES Foundation? If you have questions about the board opportunity, please contact Janet Brewer, Director Emerita, directly at jbrewer@ches.education.   Applications are open and available here CHES is seeking Administrative Assistance Do you have approximately 10 hours per week to commit to assisting CHES with administrative/bookkeeping support? Work would be done at home. Interested participants would require an accounting or bookkeeping background; including familiarity with QuickBooks Online. If interested, please reach out with a resume and cover letter to info@ches.education.   Travel Fund aka CHES Champions In 2026, CHES is asking all participants who are financially able to cover the cost of overnight hotel rooms for in-person CHES experiences. We know based on years of feedback that people would like to contribute to further CHES’s vision. CHES Champions is set up for donations of any size. With a little love, we can ensure that all of our community members have equitable access to be seen, heard, and supported.  $50= covers the cost of one breakfast meal for one attendee $150= covers a portion of our educational costs $250= covers the cost of a child at a hotel event for a day (food and childcare activities) $500= covers the cost of lodging for one attendee or one family for an event weekend Tax deductible donations can be made to the CHES Champions fund. CHES Champions helps to cover travel costs for our community members who would be unable to attend events without financial assistance.  Glanzmann Thrombasthenia  CHES recently connected with two powerhouse women based in the UK who have built a company dedicated to ultra-rares and the GT community. They are conducting a study to better understand Quality of Life and current impact of GT on patients across the world. Please consider participating in their important study- your voice matters! Glanzmann Thrombasthenia Real-World Insights Study GT data from the EPIC Cosmos Data set https://onlinelibrary.wiley.com/doi/10.1111/hae.70170  CHES Helps Secure New ICD-10-CM Code for Glanzmann Thrombasthenia Advocacy efforts led by the National Bleeding Disorders Foundation (NBDF), in collaboration with the Glanzmann's Research Foundation and the CHES Foundation, have resulted in a dedicated ICD-10-CM code for Glanzmann thrombasthenia, a rare inherited platelet disorder. The new code, D69.11, will help clinicians, researchers, insurance companies, and public health systems identify Glanzmann thrombasthenia more accurately and better understand the needs of people living with the disorder. More about the release here By Females for Females: Iron Deficiency Anemia and Your Diet. Are you a female aged 19+ with a diagnosed bleeding disorder or seeking diagnosis? If so, please join us for the next BFFF (By Females for Females) webinar on Tuesday, 10/20! The session will focus on Iron Deficiency Anemia and bleeding disorders and led by Liz Richard, MS RDN LDN CNSC. The webinar will take place on Tuesday, 10/20 at 8PM ET. Sign up to receive BFFF notices here.   Medicaid Changes This article highlights how changes to Medicaid impact a patient living with a bleeding disorder https://www.rmpbs.org/news/health/medicaid-changes-january-2027 Thromborepair This article from ASH discusses thromborepair, the tissue repair partner to thromboinflammation https://ashpublications.org/bloodvth/article/3/4/100198/570099/Thromborepair-the-tissue-repair-partner-to?utm_source=twitter&utm_medium=organic_social&utm_term=436ca5e1-92dc-495d-a8c2-20d0f19808da&utm_content=bloodportfolio&utm_campaign=2026_qiti 340B The report from Berkeley Partners show significant mark ups at some 340Bs in 2025. https://phrma.org/blog/new-report-hospitals-clinics-and-for-profit-partners-pocketed-142b-in-2025-from-340b HMB in Adolescents https://www.contemporarypediatrics.com/view/menstrual-concerns-in-adolescents-what-pediatricians-should-know Inherited Blood Disorders This article reviews a study in Pakistan but PLEASE READ. So so so interesting. The conclusion states "Close to half of the adolescents attending this centre with an IBD had moderate functional impairment, and girls had roughly twice the odds of impairment compared with boys. Severe impairment was uncommon. Functional and psychosocial assessment deserves a routine place in the follow-up of these patients, with particular attention to adolescent girls." The highlights at the end are mine- say it louder for the ones in the back! https://www.cureus.com/articles/532362-functional-impairment-and-its-determinants-in-adolescents-with-inherited-bleeding-disorders-a-single-centre-cross-sectional-study#!/ Check out our Library of resources for women with bleeding disorders!   CHES is a non-profit with 501(c)3 status. This means you can offer tax deductible donations to CHES to help support this incredible community and further our efforts for education, community and connection. In January 2023, nSpiration Foundation and CHES merged to become a non-profit committed to serving the needs of the community. Support CHES Foundation to maintain its critical programs by donating. With your help, we can:   Sustain and grow our unique events Continue educational programs and informative communications Tailor resources specifically for the bleeding disorders community              Consider making a monthly re-occurring contribution, even $5 would make a huge difference!  Click the button below and give today. Click Here to Donate Copyright © 2026 CHES Foundation (Comprehensive Health Education Services), All rights reserved.