March 20, 2017 | Hoping to bring more attention to rare diseases, several UAMS faculty and staff went to the state Capitol on March 8 to participate in the inaugural Rare Disease Day advocacy event.
Gareth Morgan, M.D., Ph.D., director of the UAMS Myeloma Institute and a professor of internal medicine in the UAMS College of Medicine, was one of several speakers in the Capitol rotunda. He highlighted the advancements the institute has made in treating the rare cancer of plasma cells in the blood and illustrated the benefits for patients and communities.
The Myeloma Institute was the first center in the world devoted exclusively to research and clinical care of myeloma and related disorders. Patients have come to the Myeloma Institute from every state and more than 50 countries. Myeloma accounts for about 1 percent of all cancers. There are about 30,000 new cases each year in the United States, according to the American Cancer Society.
“With careful attention to detail, we’re now pioneering the steps toward achieving a cure for this disease,” said Morgan. “We provide a shining example for care locally, regionally and globally.”
The event was sponsored by the Arkansas chapter of the National Organization for Rare Diseases. Andrea Taylor, the organization’s state ambassador and event organizer, said it was special to her because her son has a rare eye disease.
Pamela Williams, Ph.D., R.N., an associate professor in the UAMS College of Nursing who conducts advocacy, consultation and research with communities living with rare, genetic conditions, said she hopes the inaugural event begins a new era of rare disease awareness in the state.
“As a caregiver and nurse scientist, I want everyone to realize that 25 to 30 million North Americans live with a rare disease,” said Williams. “The term rare doesn’t apply when you think about how many people on this continent live with one of these diseases.” She also said that there are 6,000-7,000 rare diseases recognized by the National Institutes of Health.
Keynote speaker state Rep. Charlotte Douglas, of Alma, said she was inspired by family members with rare diseases to champion their needs.
“We need better medicine, more money for research, more accessibility to health care, and better support systems for families,” said Douglas. “I ask us as a community to pass good legislation that will enable these families to get the care they need.”
The UAMS Adult Sickle Cell Clinic displayed information about research into the painful disease that affects at least 1,200 Arkansans.
The UAMS Translational Research Institute staffed a table to encourage people to sign up for ARresearch.org, a website that allows Arkansans to sign up if they want to be contacted about UAMS studies that are enrolling participants. There are more than 1,200 active studies by UAMS researchers.
Taylor, reading a statement from Peter Saltonstall, president and CEO of the National Organization for Rare Diseases, said there is a need for earlier diagnosis, safe and effective treatments and assured access to medical care and services.
“The purpose of this event is to bring patients and advocates together to participate, with one voice, in the shared message that millions of people around the world are suffering with unmet medical needs and need our help,” said Taylor.