Advocacy Partnerships and Initiatives

Through its many partnerships with nonprofits that have similar missions, the Foundation participates in advocacy initiatives that benefit people living with cutaneous lymphoma.  The following are just some of our Advocacy partners:

Coalition of Skin Diseases

The Coalition of Skin Diseases advocates on behalf of individuals with skin disease. The CSD supports basic scientific and clinical research, fosters physician and patient education, generates awareness of skin diseases, and unifies member organizations through the sharing of mutual concerns.

American Academy of Dermatology - Advocacy (AADA)

The American Academy of Dermatology (AAD) was founded in 1938. It is the largest, most influential and representative dermatology group in the United States. With a membership of more than 19,000, it represents virtually all practicing dermatologists in the United States, as well as a growing number of international dermatologists. Additionally the has an active advocacy branch to its organization and provides physicians and their patients up-to-date information on issues that may affect them. The American Academy of Dermatology Association established principles to guide physician leadership in taking policy positions and advocating for health system reform. At the root of these guiding principles is the need to preserve the patient-physician relationship.

Rare Disease Legislative Advocates

Rare Disease Legislative Advocates is a program of the EveryLife Foundation for Rare Diseases designed to support the advocacy of all rare disease patients and organizations. By growing the patient advocacy community and working collectively, we can amplify our many voices to ensure that rare disease patients are heard in state and federal government.

RDLA provides free resources for successful grassroots advocacy.

Regulatory Education and Action for Patients (REAP)

REAP is an umbrella coalition comprised of 61 patient advocacy groups whose mission is to communicate the challenges patients face in accessing care to Federal and State policymakers. REAP’s collective voice assures a wide range of patient concerns are considered in policy development to maximize care access and improved outcomes as well as minimize unintended consequences upon implementation. REAP, through its member entities, contributes information and perspectives regarding important health care decisions to a degree that has not been possible heretofore by health care advocacy groups in the regulatory arena.

Advocacy

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.

National Organization for Rare Disorders

The National Organization for Rare Disorders (NORD), a nonprofit organization, is a unique federation of voluntary health organizations dedicated to helping people with rare “orphan” diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.

NORD also has a co-payment assistance program for people with peripheral T-cell lymphoma. For more information, call 202.588.5700 or visit their website.

Lymphoma Coalition

The Lymphoma Coalition is a global network of worldwide not for profit lymphoma patient organizations with a vision to free the world of lymphomas. The coalition is made up of 56 member organizations from 40 countries.

The Lymphoma Coalitions's mission is: to raise awareness of lymphomas; to improve the understanding of lymphomas; to ensure best practice management of lymphomas; and to encourage the creation of new lymphoma patient groups in countries where one does not presently exist.

One Voice Against Cancer

One Voice Against Cancer (OVAC) is a collaboration of more than 40 national non-profit organizations representing more than 20 million Americans formed to deliver a unified message to Congress and the White House on the need for increased cancer-related research and research application funding as well as for screening and prevention initiatives.

Once Voice Against Cancer hosts an annual Lobby Day providing volunteers an opportunity to meet with U.S. House and Senate members on Capital Hill.
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