Dear Addy: Finding Community

Dear Addy,

I am the only person I know who has a bleeding disorder. I don’t know any other patients at my HTC, and I live pretty far away from my nearest member organization, so I don’t usually get the chance to attend community events. I want to connect with others in the community, but I don’t necessarily know where to look. Would you be able to help connect me with others in the bleeding disorders community?

Thank you,

Von WantsAFriend

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Dear Von,

Thank you for reaching out! We at HFA understand the importance of community and make it our goal to provide opportunities to connect, in-person and virtually, for those affected by inherited bleeding disorders. HFA currently offers three distinct programs for members of our community to meet on a monthly basis. Our Blood Brotherhood, Blood Sisterhood, and Sangre Latina programs are educational support groups for people with bleeding disorders to share their experiences, learn from each other, and have meaningful conversations. Each group operates a bit differently in terms of content and structure, but they each offer a strong sense of community and belonging! Here is a summary of each of our programs:

Blood Brotherhood: Since 2007, HFA has provided a safe space for adult men with bleeding disorders (ages 18+) to meet and connect from across the country. In this private format, men with bleeding disorders can share their experiences and learn from each other. Blood Brotherhood is a close-knit network of men who educate, support, and challenge each other as they strive to live healthier lives. Blood Brotherhood hosts a monthly chat on the second Monday of every month from 8:00 PM – 9:30 PM ET. You can register here to join Blood Brotherhood. Please contact Brian DuVal, b.duval@hemophiliafed.org, for more information regarding Blood Brotherhood.

Blood Sisterhood: Whether you have a bleeding disorder diagnosis or are seeking one, you are welcome. Take advantage of the opportunity to connect with community members across the country. You will find a community of strong self-advocates. Blood Sisterhood is for anyone hoping to learn from others, share experiences, and find a peer-support network. Blood Sisterhood hosts a monthly chat on the second Wednesday of every month from 8:30 PM – 10:00 PM ET. You can register here to join Blood Sisterhood. Please contact Jeanette Jones, j.jones@hemophiliafed.org, for more information regarding Blood Sisterhood.

Sangre Latina: HFA’s Sangre Latina Program was created to assist bleeding disorders patients and families in the Spanish-speaking community. We provide educational material in Spanish that helps patients manage their bleeding disorders. We offer local and national events in Spanish. Our programs are high quality, inclusive, and culturally appropriate. Sangre Latina hosts their “Hablando Contigo” chat on the last Wednesday of every month from 9:00 PM – 10:00 PM ET. You can register here to join Sangre Latina. Please contact Monica Diaz, m.diaz@hemophiliafed.org, for more information regarding Sangre Latina.

If you are interested in and eligible to join Blood Brotherhood, Blood Sisterhood, or Sangre Latina, please do not hesitate to sign up! Just know there is a community out there waiting to welcome you with open arms!

Sincerely,

Addy