Through its many partnerships with nonprofits that have similar missions, the Foundation participates in advocacy initiatives that benefit people living with cutaneous lymphoma. Following are recent advocacy events we've participated in through these partnerships:
On February 29, 2012, the National Institutes of Health (NIH) celebrated the fifth annual Rare Disease Day with a day-long celebration and recognition of the various rare diseases research activities supported by the NIH Office of Rare Diseases Research, the NIH Clinical Center, other NIH Institutes and Centers; the Food and Drug Administration’s Office of Orphan Product Development; the National Organization for Rare Disorders; and the Genetic Alliance.
David Lamb, cutaneous lymphoma patient and Cutaneous Lymphoma Foundation board member, and Susan Thornton, cutaneous lymphoma patient and the Foundation’s Management Consultant for Programs and Services, attended this important event to increase awareness of cutaneous lymphoma, how the disease impacts patients, and advocate for increased rare disease research efforts.
“Attending this event was truly inspiring. As a patient with a rare disease, I was in awe of all that is being done to make progress on behalf of patients,” commented Mr. Lamb.
A few highlights from the meeting:
• There are approximately 7,000 rare diseases worldwide – but there are treatments for only 250 of them.
• The number of rare diseases is increasing because medical advances have enabled physicians and scientists to properly identify and classify them.
• Eleven percent of NIH’s budget -- $3.5 billion – is devoted to rare diseases. NIH’s Office of Rare Disease Research oversees 9,400 projects.
• Rare Disease Day was observed in 60 countries.
• One rare disease highlighted has only seven known patients, which should help make cutaneous lymphoma patients feel a bit less lonely.
The Foundation looks forward to continued collaborations with the NIH and other organizations advocating on behalf of patients with rare diseases. Together, we will make sure that each person with cutaneous lymphoma gets the best care possible.
Cutaneous Lymphoma Foundation Participates in One Voice Against Cancer; Partners with American Academy of Dermatology in Washington, DC
On May 23-24, 2011, Susan Thornton, cutaneous lymphoma patient and the Foundation’s new Management Consultant for Programs and Services, participated in the One Voice Against Cancer (OVAC) Lobby Day in Washington, DC.
OVAC is the nation’s largest coalition of organizations advocating against cancer and OVAC Lobby Day is one of the largest cancer advocacy events on Capitol Hill. The Foundation was invited to join through its partnership with the American Academy of Dermatology and, during this event, 40 cancer organizations descend on Capitol Hill to send one cohesive message to Congress about the importance of federal funding for cancer research and prevention programs.
During her visit, Susan met with many legislative staff members including those for Senators Bob Casey and Pat Toomey to advocate for the five areas of focus discussed during OVAC visits:
Because the economic climate is poor, OVAC members’ visits were of particular importance as many line items in the federal budget that help cancer patients may be decreased including funding of research at the NIH, funding of cancer prevention efforts at the CDC and funding of cancer drug approvals through the FDA.
In meetings with the legislative staff members, Susan was able to heighten awareness for the Cutaneous Lymphoma Foundation, discuss the burden of cutaneous lymphomas on people suffering with its debilitating effects, and encourage continued and increased financial support for federal programs that can help those affected by cutaneous lymphoma.