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.
Two times a year, the National Patient Advocate Foundation (NPAF) convenes the Policy Consortium bringing together a diverse group of national health care thought leaders to discuss issues of importance to all health care stakeholders. This fall's discussion addressed "Price, Value and Access: A Discussion on Solutions to the Rising Costs of Health Care."
Susan Thornton, CLF's CEO, and Claudia Day, former CLF Board Member and patient advocate attended the meeting. Click here to read highlights from the Consortium.
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.
June 5, 2013 - Nancy Davenport-Ennis' commentary on Congress' lack of action in providing improved medicare benefits for cancer care was published on the Roll Call website. Roll Call is a source for Capital Hill news. Nancy, a cancer survivor, is the Founder and CEO of the National Patient Advocacy Foundation (NPAF), a policy organization that seeks to improve patient's access to care. As a member of the NPAF, the Cutaneous Lymphoma Foundation is a part of this message to Capital Hill.
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!
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.
The Cutaneous Lymphoma Foundation will be joining the National Organization for Rare Disorders (NORD) and others around the world in observing World Rare Disease Day on February 28, 2013. On this day, millions of patients and their families will share their stories to focus a spotlight on rare diseases as an important global public health concern.
A rare disease is one that affects fewer than 200,000 Americans. There are nearly 7,000 such diseases affecting nearly 30 million Americans. On Rare Disease Day, people with rare diseases around the world promote awareness of the challenges of living with a rare disease. The global theme for 2013 is “Rare Disorders Without Borders.”
World Rare Disease Day was launched in Europe four years ago and last year was observed in more than 60 nations. It is always observed on the last day of February. On that day, patients and patient organizations will post stories, videos and blogs online and host events to raise awareness of these diseases, which are often called “orphans”.
This year, the observance has special significance in the U.S. because 1983 is also the 30th anniversary of the Orphan Drug Act, which provides incentives to encourage companies to develop treatments for rare diseases, and of NORD, which was established by patient advocates in 1983.
Rare Disease Day 2013 activities in the U.S. will include awareness events at several State Houses, a Rare Disease Research Hall of Fame, a Handprints Across America photo gallery, and an event at the National Institutes of Health (NIH) in Bethesda, MD.
In 1983, the Orphan Drug Act was passed by Congress to create financial incentives for companies to develop treatments for rare diseases. Since then, more than 400 orphan drugs and biologics have been approved by the Food and Drug Administration (FDA). It is estimated that approximately 15 million Americans benefit from these products, but that still leaves millions more with diseases for which there is no approved treatment.