Dr. Robert M. Campbell, Jr. is Director of the Center for Thoracic Insufficiency Syndrome (CTIS) and an Attending Physician in the Division of Orthopaedic Surgery at Children’s Hospital of Philadelphia …
The GBS|CIDP Foundation International, one of the first member organizations of NORD, works towards a future when no one with Guillain-Barre syndrome (GBS), chronic inflammatory demyelinating polyneuropathy (CIDP), and related …
Richard Pazdur, M.D. is the Director of the Food and Drug Administration’s Oncology Center of Excellence (OCE), which leverages the combined skills of the FDA’s regulatory scientists and reviewers with …
Patrick Dunegan and his wife, Jennifer, met at church, spending time together serving their local community as Kentucky Colonels and through volunteer work with the Jewish Hospital of Louisville. Each …
Elisabeth Dykens, Ph.D., a clinical psychologist and researcher studying rare genetic syndromes, has long been a leader in the field of intellectual and developmental disabilities. Since she began her research …
In 2009, Sociology professor Maria Kefalas, Ph.D., and her husband welcomed their fourth child to the world. They named her Calliope Joy (Cal for short) to symbolize the overwhelming joy …
A passion for patient advocacy, which has become her life’s work, stems from great personal loss for Ellen Sigal, Ph.D. After exhausting all of her options including an experimental therapy, …
“Every time I meet someone new, I am focused on going into the interaction with an open mind and accepting heart,” says Chris Ulmer, co-founder and front man behind …
An exciting new piece of legislation known as the RARE Act (Rare disease Advancement, Research, and Education Act) of 2018 (H.R.5115) was recently introduced by Congressmen Carson and Costello. This legislation would …