My top social media picks for the bleeding disorders community

The content is targeted, educational, insightful, and supportive

by Jennifer Lynne | March 29, 2024

Navigating social media for information about hemophilia and other health issues can produce mixed results, but amid the noise are shining beacons of knowledge and support. In honor of Bleeding Disorders Awareness Month, which is now coming to an end, the following are five exceptional social media accounts and websites that stand out to me for their educational value and helpfulness — and one is very personal.

‘BloodStream’ podcast

“BloodStream” isn’t just a podcast; it’s a lifeline for the bleeding disorders community. Hosted by the dynamic duo of patient advocate Patrick James Lynch and nonprofit aficionado Amy Board, each episode is a compelling blend of entertainment and education.

The two co-hosts bring together a diverse array of voices, including patients, caregivers, advocacy leaders, and medical experts, to delve into the most pressing issues facing people affected by inherited blood disorders. They don’t shy away from tough topics, including the recent shake-up at the Hemophilia Federation of America and the devastating era of tainted blood era.

Communication and empathy are important for disability advocates

Haemophilia Foundation Australia

Website: https://www.haemophilia.org.au/
Instagram: @haemophiliafoundationaustralia
Facebook: Haemophilia Foundation Australia

Our mates from down under truly excel at managing their digital presence. Their posts strike the perfect balance between informative and engaging, offering a treasure trove of educational content alongside valuable tips, tricks, and insights from the community.

Maya Bloomberg, the Heme NP

Instagram: @thehemenp

Maya Bloomberg has an impressive 13,300 followers on Instagram. Her topics include sickle cell disease, bleeding disorders, and mental health. She is a family nurse practitioner (NP) specializing in nonmalignant hematology and has a wealth of expertise from her academic and professional pursuits at the University of Miami.

Her profound commitment to these areas of healthcare not only showcases her clinical prowess, but also underscores her passionate advocacy for marginalized communities. Bloomberg’s work highlights modern medicine’s glaring health and racial disparities, bringing awareness to the forefront of discussions and inspiring action toward equitable healthcare practices.

Through her efforts, Bloomberg stands as a beacon of compassion, striving to bridge gaps in care and promote inclusivity within the hematology community.

Girls Bleed Too

Website: https://www.girlsbleedtoo.com/
Instagram: @girlsbleedtoo

This site marks the beginning of my personal journey to spotlight my work with Hemophilia News Today and the Coalition for Hemophilia B. My goal is to offer valuable resources for women in the bleeding disorders community.

I’d appreciate your likes, shares, and comments as I start this new endeavor. I plan to create a supportive space where women can find empowerment, information, and solidarity. Your support means the world to me, and I’m grateful for every step of this journey ahead.

Great Lakes Hemophilia Foundation, Wisconsin

Website: https://glhf.org/
Instagram: @wiblooddisorder
Facebook: Great Lakes Hemophilia Foundation

Hats off to the wonderful folks in my old stomping grounds of Wisconsin for consistently delivering fresh and captivating content. Their commitment to keeping the community informed and involved is truly commendable.

Moreover, they’ve pioneered one of my all-time favorite fundraisers in the hemophilia sphere: the “Best Bloody” competition. This innovative event not only raises vital funds, but also brings people together in a spirited celebration of creativity and camaraderie. Cheers to Wisconsin for setting the bar high and making a meaningful impact in the hemophilia community!

Do you follow other accounts in the bleeding disorders community that are helpful? Please share in the comments below.

Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to hemophilia.

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About the Author

Jennifer Lynne Jennifer Lynne is an entrepreneur specializing in digital marketing, a self-professed computer nerd, and a nationally competitive Scrabble player. Jennifer has strong ties to the bleeding disorder community; she was diagnosed in 1975 with hemophilia B and Von Willebrand’s disease at age 10. She is a University of Wisconsin, Madison graduate with a BA in marketing and journalism, and was in MIT’s Birthing of Giants Fellowship Program. A native of Brookfield, Wisconsin, she now resides in sunny Punta Gorda, Florida. Jennifer hopes her column will raise awareness for hemophilia and other bleeding disorders, especially among women.

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