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ACTION ALERT: July 17, 2017 Update on BCRA

A vote on the health care bill will happen soon, and our organizations need you to take action. On July 13, 2017, the Senate released another “discussion draft” of the BCRA. Despite promises from numerous lawmakers to change the bill, the latest iteration of the bill actually decreases protections for those with pre-existing conditions. The […]

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Bleeding Disorders Organizations Urge Senators to Vote No on Better Care Reconciliation Act

  For the past few days, our organizations have been encouraging you to call, tweet and email your Senators to vote No on the Better Care Reconciliation Act (BCRA).  On June 27th, Senate Majority Leader Mitch McConnell delayed the Senate vote on the bill but the vote could occur quickly if Leader McConnell is able […]

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ACTION ALERT: Ask Your Senators to Vote NO on BCRA!

On Thursday, June 22, 2017, the Senate leadership released a “discussion draft” of its version of legislation to repeal the Affordable Care Act (ACA). Despite promises from numerous lawmakers, the Senate bill in fact builds off the much criticized, House-passed American Health Care Act (AHCA). The Senate discussion draft would, among other things: Undermine protections for […]

HFA Honors Congressional Representatives as Champions for Chronic Illness

On May 24, 2017, we hosted our 4th Annual Patient Fly-In in Washington, DC alongside an online Virtual Hill Day. As they consider HR 1628, the American Health Care Act (AHCA), the Senate has indicated that they intend to start from scratch on health reform and they need to hear from their constituents when crafting their plan. […]

Bleeding Disorders Advocates Host Patient Fly-In

  Washington, DC– Tomorrow, Hemophilia Federation of America (HFA) is hosting a Patient Fly-In and Virtual Hill Day for the bleeding disorders community. As questions surrounding health reform move to the Senate, patients will meet with their Senators, ensuring that their needs are represented. Patients will also participate in a Virtual Hill Day by calling, […]

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 […]

We Are Always Here For You

Dear Advocate: After yesterday’s election, there are many questions for the bleeding disorders community. While we don’t have all of the answers, we understand the concerns many have. No matter what your politics are, know that HFA is there for YOU — the bleeding disorders community. We offer you our reassurance that we will continue to […]

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Dear Addy: Advocacy in Rural Communities

Dear Addy, I live in rural Wyoming and we do not have a hemophilia treatment center (HTC) in my state. How do I advocate for myself and better treatment at my local doctor’s office? Sincerely, Western Advocate ______________________________________________________________________________________ Dear Western, Whether you live in a rural or metro area without an HTC, or in a […]

Intern Introspective: Through Our Eyes

Earlier this summer, we introduced you to Eric and Camila, our summer Policy Interns. They have been busy all over DC, attending Congressional hearings, executive briefings, and much more. Recently, they got to experience first-hand the planning and execution of our 3nd Annual Patient Fly-In. Below is their take on the week. _________________________________________________________________________________ What was […]

Advocacy News

New Patient Advocacy Coalition Leads the ‘Next Generation of Health Care Reform’

HFA recently became a charter member of Partners for Better Care (PBC), a nonpartisan coalition of patients and patient groups that seeks to improve access to quality medical care. The following is a press release from PBC about this partnership. Patient advocacy groups announced on Thursday, December 3, the launch of Partners for Better Care (PBC), a nonpartisan coalition beginning with over 10 […]

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