Undiagnosed Diseases Program

IRP Clinical Trials Provide Irreplaceable Hope

Volunteering for Studies Allows Me to Help Myself and Others

NIH research participant Noah Victoria in a patient room at the NIH Clinical Center

Watching my dad carry the luggage to the car has become an all-too-familiar sight. It’s time for my mom and me to head to the NIH again, another trip in a lifelong journey for answers. I give my dad a long hug goodbye, and then I watch him stand alone in the driveway as we back away. The gravel arduously aches and crunches under our tires, a sound as uncomfortable as my symptoms even on my good days — few as there are.

Isaac Fights to Inspire Others

Reblogged from The Children's Inn at NIH.

Isaac was born to fight. Arriving more than five weeks early by emergency C-section, it wasn’t just his way of coming into the world that made him different from his three brothers. While he initially looked healthy, his parents soon realized Isaac’s health was something he and the entire family would need to be fighting for every single day.

NIH’s Undiagnosed Diseases Program Gives 6-year-old Hope

Reblog from Children's Inn at NIH: Family Stories.

Annaleise Knight

Annaleise Knight is an active, outgoing six-year-old. In her hometown of Grayslake, Illinois, she loves riding her bike, swimming, taking ballet and tap lessons, and playing outside on the swings and trampoline with her three siblings, Nicholas, 16, Braden, 7, and Catherine, 4. Although Annaleise has an exuberant personality, she did not always have the energy and strength to do her favorite activities.

Top 5 Reasons to Study Rare and Undiagnosed Diseases

What is a rare disease? And how rare is “rare”? When I began my research at the NIH, I had a textbook understanding of rare diseases, but now, after four years as a postdoc in the IRP, I understand a bit more of what it means to the patients and researchers who try to help them.

Rare Diseases Population