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Hi,
It's been a minute since I wrote here about advocacy and using your voice. With the mid term elections around the corner, I feel compelled to offer a perspective. It might not be your perspective and that's okay. Mine POV- and maybe (hopefully) yours too!- is rooted in compassion and equity and community.
November 3rd is soon. Now is the time to educate yourself on the issues and candidates. I am not telling you HOW to vote,
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I am asking you to please VOTE. Make your voice heard. Ensure that those living with bleeding disorders - heck any disorder that is struggling to be seen, heard, and supported- is valued in your vote. My hope is we will stand on the right side of history to know we put every effort in to create and sustain a world full of love and kindness. Use your voice. It matters.
Best,
Heather
Please note: The next Digital Digest will come out on 11/20/26. The CHES team will be in Tampa the week of November 9th to run our One Drop Event!
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From a community member and CHES board member, Christy Miller
As a board member at the Comprehensive Health Education Services (CHES) Foundation, I have been a dedicated steward of the financial health, mission, and vision of this essential nonprofit. For me, this work is deeply personal. My children and I all live with Factor VII deficiency, so I know firsthand the profound impact of having an informed, compassionate community behind you. Navigating this rare condition as a parent and patient ignited my passion for advocacy across the bleeding disorders space and ultimately led me to CHES, where connection and understanding are at the core of everything we do.
CHES fills a vital space to ensure each person is seen, heard, and supported. I encourage you to learn more about the critical and unique ways CHES provides education, resources, and belonging to underserved populations across our community. In 2026 alone, CHES hosted the only inhibitor-only, patient-focused event in the country, including our inhibitor family camp, hosted the national Ultra-Rare Conference, partnered with a local chapter for a joint women’s event, and hosted multiple engaging Spanish-language webinars for our Hermanas de Sangre program, alongside specialized sessions for our By Females For Females (BFFF) cohort
To learn more about inhibitors, ultra rares, and other CHES programming, please visit Comprehensive Health Education | Rare Bleeding Disorders.
I know you have many choices when deciding where to direct your hard-earned charitable contributions. CHES is an organization near and dear to my heart, and I ask that you consider joining me in supporting our mission. With your partnership, we can continue expanding and enhancing these life-changing programs in 2027.
Warm regards,
Christy Miller
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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.
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One Drop 2026 in Tampa is fast approaching! We are full for 2026. Any applications now will be automatically placed on our waitlist. Visit the CHES website to see a list of Ultra-Rare conditions, https://ches.education/one-drop
If you want to apply, you will be added to our Ultra-Rare communications and learn about educational and community opportunities that benefit the ultra-are CHES Community.
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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.
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Importance of communication and consultation with hematologist
https://hemophilianewstoday.com/columns/consulting-hematologist-before-minor-medical-procedures/
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
Iron Deficiency Anemia and Your Diet
CHES hosted a BFFF (By Females for Females) webinar on Tuesday, 10/20. The session focused on Iron Deficiency Anemia and bleeding disorders and was led by Liz Richard, MS RDN LDN CNSC. Webinar topics are determined by community feedback. Sign up to receive BFFF notices here.
ASH Guidelines for Iron have been updated. Read more here:
https://ashpublications.org/bloodadvances/article/doi/10.1182/bloodadvances.2025015950/570502/American-Society-of-Hematology-2026-guidelines-for
High Titer Formation after AAV
https://ashpublications.org/blood/article-abstract/doi/10.1182/blood.2026035372/571588/Cases-of-High-Titer-Inhibitor-Formation-After-AAV?redirectedFrom=fulltext
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Check out our Library of resources for women with bleeding disorders!
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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.
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