Advocacy News

Please note the important advocacy news items below that are of high priority to the cutaneous lymphoma community.  We encourage you to learn more about these issues and how, together, we can affect positive change and grow support for the issues that are most important to people affected by cutaneous lymphoma.

Share Your Experience Through the Lymphoma Patient Survey

April 2014 - As a member of the Lymphoma Coalition, a worldwide umbrella organization dedicated to working with patient groups around the globe, the Cutaneous Lymphoma Foundation invites you to participate in the 2014 lymphoma patient survey.  By participating in this survey, you will help provide input on specific issues experienced by lymphoma patients around the world. Capturing this data will help the Lymphoma Coalition to better advocate for change around the world.  
The survey is available in several languages. Click here for the English version or to access another language.

Thank you for participating.

CLF Signs REAP Comment Letter on Proposed Medicare Changes

March 2014 - The Regulatory Education and Action for Patient (REAP) Council submitted an official comment letter concerning proposed changes to the Medicare spending. The letter was submitted to Marilyn Tavenner, the administrator of Centers for Medicare and Medicaid Services. The letter covers the following principles: (1) proposals that may impact Medicare beneficiary access to needed drug therapies (both positively or negatively); (2) proposals focused on enhancing quality of care; and (3) proposals focused on enhancing beneficiary and stakeholder understanding of or symplifying the admnistration for the Medicare Part D benefit.

Click here to read the full letter.

"Friends of Cancer Research" Letter of Support of FDA Program

March 2014 - The patient advocacy organization, Friends of Cancer Research (FCR), is a leading voice advocating for policies and solutions that will get treatments to patients in the United States in the safest and quickest way possible. FCR, with over 30 over advocacy organizations including the Cutaneous Lymphoma Foundation, recently sent a letter to the US Representative Rosa DeLauro to re-affirm their support of the programs the FDA uses to expedite the development and review of important drugs to address unmet medical needs.

Read the FCR's letter in full here.

2014 Rare Disease Day - February 28, 2014

The Cutaneous Lymphoma Foundation will be joining the National Organization for Rare Disorders (NORD) and others around the world in observing Rare Disease Day on February 28, 2014.  On this day, millions of patients and their families will share their stories to focus a spotlight on rare diseases as a global public health concern.

To learn how you can get involved in the United States, visit

To read how Rare Disease Day is being observed worldwide, visit

Want to get involved?

  • Do you live in the Jacksonville, Florida area and want to participate in a Rare Disease Day event? Cynthia Gist, mother of a son with CTCL, will be hosting the 2nd Annual Rare Disease Day from 11 am to 1 pm on February 28, 2014 in the Promenade section of the Jacksonville Public Library.
  • Join NORD and ABC news for a Rare Disease Day tweetchat. NORD will be co-sponsoring a tweetchat on the topic of "Conquering Rare Diseases" with ABC News' Dr. Richard Besser, Chief of the ABC News Medical/Health Unit, on Tuesday, Feb. 25, at 1:00 p.m. ET.  Click here to read more.

One Voice Against Cancer Fact Sheets

One Voice Against Cancer (OVAC) is a collaboration of non-profit organizations whose purpose is to advocate as "one voice" on behalf of those affected by cancer to make Congress and the White House aware of issues related to a cancer diagnosis and the need for increased spending for cancer research. Click here to learn more about OVAC's purpose and current stance on cancer research.

Help FDA Help Patients Have A Bigger Voice: The New Patient Network Website

Want your voice heard concerning the FDA's regulation of medical products? Visit the FDA's new Patient Network website!

With their new website, the FDA welcomes the unique perspective of patients, family members, caregivers and patient advocates directly affected by serious disease, to the Agency’s decision-making processes. Get involved....your voice counts!

Advocacy - Why Are You Asked To Take Action So Many Times?

Ever wonder why you may be asked to frequently contact your congressional representative on the same bill? Truth is, Congress can vote on a bill five times before it becomes law. Why five times? And, why is it so important for you to act each time? Watch the American Cancer Society 90-second video to explain it all.