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.
Policy
From the article, What is the Difference Between Law, Policy and Regulation, According to 7 Experts, policy precedes law and is typically informed by how people would like to see things be or be improved. "The main difference between policy and law is that law can compel or prohibit behaviors, while policy merely guides actions toward those that most likely will achieve the desired outcome. If we want to create mandates for the policy to be followed, and implications if it is not, we can work with our district representatives and senators to draft bill language that can begin the process of transforming policy into law."1
Regulatory
From the same article mentioned in Policy, "once a law has been passed, implementation of the law is the next step. A regulation is a rule within a law that specifies how the ideas of the law are actually going to be implemented. They are rules made by a government or other authority in order to control the way something is done."1
Awareness
Raising awareness of cutaneous lymphoma and the Cutaneous Lymphoma Foundation both through active engagement across different channels with collaborative partners or alone with the goal of impacting outcomes for our community.
Scientific/Clinical
Ensuring the patient perspective is being provided within the scientific and clinical communities wherever it can make an impact on accessibility to care, treatments, and quality of life for patients and their care partners.
References
1 Upjourney. What is the Difference Between Law, Policy and Regulation, According to 7 Experts. (2023, March 21). https://upjourney.com/what-is-the-difference-between-law-policy-and-regulation
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.