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Vol. LXIV, No. 14
July 6, 2012

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Psoriasis Patient-Advocates Tour NIH
NIAMS staff met with 12 patient-advocates from the National Psoriasis Foundation during their recent visit to NIH to learn about the biomedical research process.

NIAMS staff met with 12 patient-advocates from the National Psoriasis Foundation during their recent visit to NIH to learn about the biomedical research process.

Twelve patient-advocates from the National Psoriasis Foundation (NPF) met with NIAMS scientists during a recent visit to NIH to learn more about the biomedical research process as part of NPF’s 2012 Capitol Hill Day. During the day, patients and their families also met with members of Congress to request continued support for psoriasis research.

Anita Linde, NIAMS director of the Office of Science Policy, Planning and Communications, greeted the group and provided a brief overview of the mission and structure of NIH and NIAMS. “Patients and their advocates are core partners for this institute,” she said. “Many voices are engaged in the process of helping us to identify new scientific opportunities and decide what research to pursue.”

Dr. John O’Shea, NIAMS scientific director, explained how recent discoveries in NIAMS labs have shed light on the genetic risk factors for psoriasis and also led to potential new treatments. He discussed how these advances allowed scientists to discover, unexpectedly, that people with psoriasis, ankylosing spondylitis and inflammatory bowel disease have shared genetic risk factors for these diseases. “I hope I can convey the excitement we have about the discoveries in basic research that can be translated into therapies for treating patients,” he said. “We think this is an amazing time to be in science. We have made enormous progress. The challenge is we have to keep it up.”

The group toured the NIAMS Laboratory of Skin Biology led by its chief, Dr. Maria Morasso, and postdoctoral fellow Dr. Olivier Duverger. They also toured the Laboratory of Muscle Stem Cells and Gene Regulation led by Dr. Vittorio Sartorelli, chief.

Morasso described how her team is able to use its research on mice to learn more about the genetic factors that cause psoriasis in humans. The guests were able to peer through a microscope to see skin cells from the hair follicles of a mouse model for psoriasis.

In his lab, Sartorelli demonstrated the latest technology for sequencing the human genome, which is helping researchers gain insight into the genetic factors that cause psoriasis and other diseases and the likelihood for developing these diseases. It also will enable clinicians to tailor the most effective treatments for individual patients. With the drastic decline in the cost of sequencing genomes, it will make it easier to diagnose, manage and treat many diseases. With improved technology and reagents, Sartorelli pointed out that the cost of sequencing an individual’s genome will be cut to $1,000 or less in the near future.

After the lab tours and presentations, many in the group said they were encouraged by the passion and commitment of the NIAMS scientists and excited to see the progress being made in psoriasis research at NIAMS.

“This is unbelievable,” said one visitor. “There’s so much research going on. I like to be active, so I am thankful for the biologics. Now that I know more about the science, I can be a better advocate. NIH funds will help improve what we know about the disease and can help people get diagnosed sooner.”

“It was profoundly moving,” said another visitor. “I was really touched by the way the scientists see their work as a labor of love. It benefits our lives and the people we care about.”

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