Programs

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

Coalition of Skin Diseases (CSD)

The mission of the CSD is to advocate on behalf of individuals with skin disease through

  • supporting basic science and clinical research
  • fostering physician and patient education
  • generating awareness of skin disease
  • supporting the growth of member organizations through the sharing of mutual concerns, which may increase the pace of discovery of a cure, while improving the quality of life for those affected.

The CSD also works closely with the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) to coordinate research efforts for all skin diseases. Members of the Coalition meet annually with members of Congress and testify when selected before the appropriations committees to educate Congress and the public on the seriousness of skin diseases while stressing the need for increased medical funding.

For more information, visit www.coalitionofskindiseases.org

 

Lymphoma Coalition

Lymphoma Coalition: Worldwide Network of Lymphoma Patient Groups

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. It began in 2002 with 4 countries sharing best practices and now work together in many advocacy initiatives and educational dissemination and support.

The Lymphoma Coalition's Mission is:

  • to raise awareness of lymphomas
  • to improve the understanding of lymphomas
  • to ensure best practice management of lymphomas
  • to encourage the creation of new lymphoma patient groups in countries where one does not presently exist

For more information, visit www.lymphomacoalition.org

 

One Voice Against Cancer

One Voice Against Cancer (OVAC)

One Voice Against Cancer is a collaboration of national non-profit organizations representing millions of Americans, who deliver a unified message to Congress and the White House on the need for increased cancer-related appropriations. Created in 2000, it has grown into an effectiver lobbying coalition on cancer funding that has enabled the community to enhance policymaker's awareness of the need for substantial increases in essential cancer programs.

OVAC hosts an annual Lobby Day providing volunteers an opportunity to meet with House and Senate members on the Hill.

For more information, visit www.ovaconline.org

 

Regulatory Education and Action for Patients

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.

For more information, visit www.reapforum.org