Advocacy is the act of educating, supporting and recommending an action.
At the Cutaneous Lymphoma Foundation, we advocate on behalf of people affected by cutaneous lymphomas to affect positive change on many important fronts that include increasing federal funding of research, increasing federal funding for awareness and education, and ensuring access to high quality health care for patients coping with a diagnosis of cutaneous lymphoma.
Are you experiencing challenges with your personal journey with cutaneous lymphoma and do you want to make your voice heard by expressing your thoughts to your elected officials? Do you simply want to bring awareness to cutaneous lymphoma by sharing your story and information about this disease?
The Cutaneous Lymphoma Foundation invites you to become empowered and utilize a variety of advocacy resources provided here that can help you garner attention and support for the issues that are most important to you and the cutaneous lymphoma community.
The following are some helpful resources:
Your Voice Matters: How (and Why) to Take Action on Public Policy - a primer on how to engage in public policy as a patient advocate.
Advocacy & Awareness Webinar - Monica Bryant, COO of Triage Cancer, provides an informative overview of the different types of advocacy including practical ways for individuals to become effective and empowered advocates.
How to Contact Your Elected Officials - Learn how to get in touch with your U.S. federal, state, and local elected leaders.
Legislative Tracker - The Rare Action Network offers a monthly legislative tracker to subscribers with updates on the bills that are important to improving the lives of people and families in the rare disease community. The Rare Action Network is powered by the National Organization for Rare Disorders (NORD).