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Patients’ Genetic Privacy Threatened by H.R. 1313

Congress is currently considering legislation that would undermine patient privacy and workplace non-discrimination protections for individuals and families affected by genetic conditions. This legislation, the Preserving Employee Wellness Programs Act (H.R.1313) was approved by a House committee earlier this month. Under existing law, an employer can run a “voluntary” workplace wellness program – and can […]

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Dear Addy: Advocacy Committee

Dear Addy, I really want to help my local organization grow its advocacy efforts by starting a committee. However, I’m overwhelmed by the process. Where should I start, and how do I maintain an advocacy committee? Signed, Committee Quandary Dear Quandary, Creating or joining an advocacy committee is a great role if you are interested […]

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Dear Addy: Social Media

Dear Addy, I often hear about using social media to engage policymakers and spread awareness to friends. Does this really work? How can I advocate on social media without being annoying or preachy? Signed, Social Media Maven Dear Maven, Social media can be an excellent platform to raise awareness for an issue or cause you […]

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Dear Addy: Out-of-Pocket Expenses

  Dear Addy, I just got my daughter’s January EOB, and I realized that my family is now responsible for up to $14,300 in out-of-pocket (OOP) expenses. Why did this amount go up $600, even though we kept our same insurance? And how can I afford this?!? HELP! Signed, Anxious about OOPs Dear Anxious, High […]

Millennials Get Busy- Advocacy for Young Adults

By Sarah Shinkman Learning how to advocate is an important life skill at any age. Whether you are practicing personal, peer, or group advocacy, you have the power to influence decisions that may affect you and others. HFA’s final Young Adult Hangout of 2016 featured two community advocates and a health insurance overview by Erin […]

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Okay, So What Can We Do?

By Lori Long and Sarah Shinkman “Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.” -Margaret Mead To find an example of the type of group Margaret Mead speaks about in her famous quote, look no further than our bleeding disorders community. […]

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Dear Addy: Self-care

Dear Addy, With the holidays behind us, I’m trying to focus on taking care of myself in the new year. However, I struggle to do this between family, work, and social obligations. Can you provide some tips on self-care so I can be a better advocate for myself and my family? Signed, Stressed Out Dear […]

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Infusing Love: Now What?

  This week the Infusing Love Mom’s Blog will tackle a touchy subject: What happens to health care in 2017? Is there a replacement for the ACA that will offer support and protections? Whether your politics lay left, right, or center, as a community, we all live with having bleeding disorders in our lives and […]

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Dear Addy: Workplace Disclosure

Dear Addy, I just accepted my dream job, and I can’t wait to get started. Unlike my last job, however, no one knows I have a bleeding disorder. When should I approach my new employer with this, and how much should I share? Sincerely, New Job Jitters Dear New Job, You only need to disclose […]

Dear Addy: New Years Resolution

Dear Addy, My new year’s resolution is to be a stronger advocate for the bleeding disorders community. How do I reach people and where can I find information to share? Signed, Want to Be the Change Dear Change, You came to the right place! HFA has several resources available for people to increase their awareness […]

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Assisting and Advocating for the Bleeding Disorders Community