APLUS Coalition Urges Congressional Support for Rare Disease Patients!

Please reach out to your elected officials to stand with the bleeding disorders and other chronic disease communities by urging them to join the Congressional Plasma Caucus!

In May of this year, HFA, NHF and the eleven national patient organizations that make up the American Plasma Users (APLUS) Coalition, applauded the creation of the Congressional Plasma Caucus. The American Plasma Users (APLUS) Coalition represents the over 125,000 Americans living with chronic disorders, including bleeding disorders, that depend upon plasma-derived therapies to lead healthy, productive lives.

This bipartisan Caucus aims to:

Educate lawmakers about rare disease, blood and plasma supply and safety initiatives.
Emphasize the vital role of plasma in treating various life-threatening and chronic conditions.
Bring together stakeholders from America’s plasma donors, suppliers, and patients to ensure the safety and availability of plasma and plasma-derived therapies in the United States.
Highlight the patient voice in issues affecting patients who depend on plasma-derived treatment, including those with bleeding disorders.
Enhance the influence of patient stories and perspectives, patient advocacy organizations, and experts in blood and plasma safety in policymaking.

While the Caucus has made strides in membership over the last two months, the leaders of the Caucus have emphasized the need for more membership. Members of Congress want to hear from the bleeding disorders community as to why this is so important.

American Plasma Users Coalition Urges Congressional Support for Rare Disease Patients

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Dear [recipient position will go here] [recipient name will go here],

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As an engaged constituent and advocate for individuals with bleeding disorders and chronic conditions, I am reaching out to you to highlight the urgent matter of supporting thousands of Americans living with chronic disorders who depend upon plasma protein therapies to lead healthy, productive lives.

The Congressional Plasma Caucus has been established to bring together legislators who recognize the significance of the American plasma supply. This caucus serves as a forum for education, discussion, and advocacy on matters related to chronic conditions, rare diseases, plasma-derived therapies, and the safety and availability of plasma.

It is important to note that plasma protein therapies are essential for the well-being of numerous Americans grappling with chronic disorders. Patients diagnosed with primary immune deficiency, hemophilia, clotting disorders, Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), hereditary angioedema, alpha-1 antitrypsin deficiency, and various other conditions heavily depend on plasma-derived treatments to maintain a fulfilling lifestyle.

The Caucus convened its inaugural briefing in May, fostering discussions among members of the patient community, blood centers, and first-responder organizations. Together, they delved into the wide spectrum of plasma's applications and the pressing challenges and opportunities that impact the safety and supply chain of blood and plasma in the United States. This proactive engagement exemplifies the Caucus's commitment to actively support and address the needs of our community.

I urge you to wholeheartedly join the Congressional Plasma Caucus, showcasing your unwavering support for our patient communities. By becoming a member, you will play a crucial role in advocating for the needs of those who rely on plasma protein therapies and ensuring the safety and availability of plasma in our country. For further details and to express your interest in joining the Caucus, please reach out to Emily Mace (emily.mace@mail.house.gov) with Representative Larry Bucshon or Dillon Cooke (Dillon.cooke2@mail.house.gov) with Representative Scott Peters.

Thank you for your consideration. I would be grateful for the opportunity to connect with someone from your office and share how the Congressional Plasma Caucus and its initiatives directly impact me and my family. I value your time and your commitment to policies that safeguard the well-being of Americans who face significant health challenges, including rare diseases and bleeding disorders.

Sincerely,
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[your location will go here]
[your email address will go here]

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