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I am Intramural Blog

Undiagnosed Diseases Program

IRP Clinical Trials Provide Irreplaceable Hope

Volunteering for Studies Allows Me to Help Myself and Others

Friday, February 28, 2020

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

Monday, April 10, 2017

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

Tuesday, March 29, 2016

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.

Basketball, An Unwavering Will to Fight, and the Joy Of Life – Mia’s Story

Monday, October 19, 2015

Reblogged from The Children's Inn: Family Stories.

At the age of one, Mia started to experience 105-degree fevers for weeks with no explanation. One of her specialists knew there had to be something “bigger” going on and referred Mia to the NIH's Undiagnosed Diseases Program (UDP). The UDP reviewed Mia’s medical records and recommended she see Dr. Dan Kastner.

Mia getting her “hero” Dr. Kastner’s autograph

Top 5 Reasons to Study Rare and Undiagnosed Diseases

Monday, June 1, 2015

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

Finding My Way to NIH’s Undiagnosed Diseases Program

Monday, April 6, 2015

Choosing to study biology in college was an easy decision for me. Deciding what I would do after college was a little more difficult. Sometimes I think back and wonder: How did I get here?

View from my lab at NIH

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