Clinical Center News
March 2016

Rare Disease Day features patients' voices, international collaboration

Beatrice Bowie, a NIH patient, addressed attendees of Rare Disease Day at the NIH Clinical Center on Feb. 29, 2016.
Beatrice Bowie, a NIH patient, addressed attendees of Rare Disease Day at the NIH Clinical Center on Feb. 29, 2016.
 
The Rare Disease Day, held on Feb. 29, 2016, at the NIH Clinical Center, also included a poster session and exhibits.
The Rare Disease Day, held on Feb. 29, 2016, at the NIH Clinical Center, also included a poster session and exhibits.
 
Uplifting Athletes visit Darious Gallegos, a pediatric patient, at the NIH Clinical Center on Feb. 29, 2016, as part of the NIH Rare Disease Day.
Uplifting Athletes visit Darious Gallegos, a pediatric patient, at the NIH Clinical Center on Feb. 29, 2016, as part of the NIH Rare Disease Day.
 

On Feb. 29, Leap Day, the Clinical Center and the NIH National Center for Advancing Translational Sciences (NCATS) hosted the 2016 Rare Disease Day at NIH. The event, which took place worldwide on Feb. 29, is aimed at educating policymakers and the public about rare diseases and their impact on patients' lives.

The event drew more than 500 attendees, a record high. Among the distinguished speakers were the co-chairs of the Rare Disease Congressional Caucus. Senator Orrin Hatch (R-UT) spoke via video, and Senator Amy Klobuchar (D-MN) and Representatives Joseph Crowley (D-NY) and Leonard Lance (R-NJ) each spoke in person about their work for legislation that will improve the lives of people with rare diseases.

The event initiated a mutually beneficial dialogue among public and private researchers, patients, patient advocates and policymakers; offered a venue to exchange the latest rare diseases information with stakeholders to advance research and therapeutic efforts; and put a face on rare diseases by sharing stories of patients, their families and their communities.

More than 6,500 rare diseases affect people around the world, of which only a few hundred have any treatment. Each rare disease affects fewer than 200,000 Americans. But, these illnesses affect an estimated 25 million people in the U.S. Less than 5 percent of rare diseases have a treatment. One such rare disease is the Ebola virus disease, which caused a severe epidemic in West Africa.

"With mortality exceeding 11,000 deaths, numbers that tragically eclipse all prior outbreaks combined, the 2014-15 Ebola crisis in West Africa proved how previously rare infectious diseases can flare without warning in new and unexpected ways and command the world's attention," said Dr. Richard T. Davey, Jr., deputy clinical director of National Institute of Allergy and Infectious Diseases.

Other rare diseases are studied with the help of the Undiagnosed Diseases Network (UDN), a research study funded by the NIH that brings together clinical and research experts from across the U.S. to solve the most challenging medical mysteries using advanced technologies.

"Millions of Americans who deal daily with rare disorders and thousands of physicians and scientists have dedicated their lives toward improving the lives of these individuals," said Dr. William Gahl, director of the UDN. "On Rare Disease Day, we remember all of these people and thank them for the inspiration they provide us and for their contributions to the future of medicine."

Beatrice Bowie, a NIH patient who has a rare inherited blood disorder called Sickle Cell Disease, also addressed attendees of Rare Disease Day.

"It has been a roller-coaster ride for those of us afflicted with sickle cell disease, whose lives are hanging in the balance. Fortunately, today there is much more widely disseminated knowledge of sickle cell disease, thanks to the efforts of researchers and care providers here at NIH and elsewhere," she said. "Sickle cell disease is now more commonly recognized, properly diagnosed and treated than before. But due to the mysterious nature of sickle cell disease, there is still so much to be learned to help us, the patients, and to finally find a universal cure for this disease."

The day also included a visit from Uplifting Athletes, a national nonprofit organization aligning college football with rare diseases and raising them as a national priority through outreach, research, education, and advocacy. Athletes from the University of Maryland visited pediatric patients.

Martha Rinker, speaker from the non-profit National Organization for Rare Disorders (NORD), addresses the audience on Rare Disease Day Feb. 29, 2016, at the NIH Clinical Center.
Martha Rinker, speaker from the non-profit National Organization for Rare Disorders (NORD), addresses the audience on Rare Disease Day Feb. 29, 2016, at the NIH Clinical Center.
 
Stories
Senior leaders at NIH cut a ribbon opening two hospice suites at the Clinical Center
Laptop with stethoscope nearby
Patient Photography Studio
Dr. Francis Collins, director of the NIH sties in a chair to the left. Barbra Streisand holds a microphone and sits in a chair to the right – speaks to the audience
Dr. James Gilman stands with Alba C. Murphy as they smile and hold a certificate
A paper cutout of a hand shape with a stick on the end. Text on the paper says I [heart] clean hands
Patient with Degos disease addresses symposium attendees
CDC and NIH representatives stand in a special isolation patient room at the NIH Clinical Center
Eight young men and women line up holding graduation certificates in Lipsett Auditorium
A four panel exhibit with photos, text and artifacts on NIH medical pioneers Christian Anfinsen and Michael Potter
NIH Clinical Center volunteer Chaoyang Wang
Woman with scientific cap on her head plays a touch game
Doctors at NIH speak in a lecture hall during Nurses Week
NIH Clinical Center doctor receives award
Children participate in Take Your Child to Work Day Hematology Lab
Leslie Wehrlen holds a plaque.
Sixteen women, graduates of the program and departmental leaders, gather for a photo
Pius Aiyelawo swearing into the Senior Executive Service with Dr. Lawrence Tabak
Jackson Taylor (right) and his donor Sean McLaughlin (left)
Dr. Thomas Burklow
Two care providers look at a computer
Child reading a book
NIH employee, Ricky Day, trys the prototype device
U.S. Surgeon General Dr. Jerome Adams tours Clinical Center with CC CEO Dr. James K. Gilman
First Lady Melania Trump gets together with five children to pose for a picture
Patient and doctor
Harold Varmus, Robert Frasca, Mark Hatfield and John Gallin at the groundbreaking of the hospital's new addition
Black and White photo of the first meeting of the National Advisory Eye Council (13 men) gathering on steps
Jim Gilman at Town Hall in Masur Auditorium
Martha Rinker, speaker from the non-profit National Organization for Rare Disorders (NORD), addresses the audience on Rare Disease Day Feb. 29, 2016, at the NIH Clinical Center.
The atrium gift shop recently re-opened under management of the Foundation for the Advancement of Education in the Sciences
Avish Parashar brought audience members on stage to showcase that planning is important, but the ability to improvise is essential during a seminar on Dec. 3.
The open forum of the town hall provided an opportunity for staff to learn about Building 10 updates and offer input.
Dr. Pete Choyke discusses his research with fifteen members of the Oncology Nursing Society.
Everyone who works in the Clinical Center, in every type of occupation, can provide feedback in the 2016 NIH Clinical Center Employee Survey.
Israeli Minister of Health MK Rabbi Yacov Litznan visits the NIH Clinical Center.
Dr. Richard W. Childs, joined by his wife, son and daughter, says the oath of office.
Parking booth attendants decorated their facilities to show holiday cheer.
Dr. John I. Gallin presents Dr. Clare Hastings with the 'dirt award' at her retirement gathering.
About 300 awards were presented at the Clinical Center Director's Annual Address and Awards Ceremony on Dec. 18.
Rebecca Vichi, Clinical Center volunteer.
Dr. John I. Gallin cuts the ribbon with Heidi Grolig and Jerry Sachs.
Picture of woman looking at camera.
People line up at the new marketplace Starbucks café