Servando’s Story

Servando, a 37-year-old chef, from Tulsa, OK, has Chronic Myeloid Leukemia, or CML. His treatment has been more complicated than for most patients with this potentially fatal blood cancer. So as a last resort, he came to the NIH with the hope for a cure. In CML, the bone marrow makes too many white blood […]

What Your Gift Means

Thank you to our generous donors from “Giving Tuesday” through the holidays, and to volunteers who wrapped gifts at the mall to benefit our patients and families. You make it possible for patients to stay in apartments near the NIH campus during treatment and follow up. Also, you make it possible for patients and caregivers […]

A New Frontier for a Rare Disease

A year ago, Tedi, 55, loved to bow hunt elk near her home in Montana. She looked the picture of health, but she left her job as a respiratory therapist because she suffered severe bouts of shortness of breath. Recently, on her first visit to the NIH Clinical Center, she pulled a portable respirator behind […]

Innovation in Rare Diseases – Make your Gift Count

Rachel from Indiana came to the NIH this week for the first time with her husband Richard. The 45-year-old mother of four teenagers has a rare autoimmune disease that is progressively life-threatening if untreated. After tests and conferences with her medical team, Rachel is excited that new treatment options are open to her. She hopes […]

NIH Researcher Says Support to Patients is Critical

Patients are the key to successful research at the National Institutes of Health. So, too, are the dedicated researchers with whom they partner. Together, they pioneer lifesaving discoveries. Dr. Carsten Bonnemann says the support to patients from Friends at NIH is essential! “The NIH covers many costs, but we can’t cover all the financial hardship […]

Jackson Thanks NIH and Friends

Jackson, a Portland, Oregon teen-ager, was suffering from a rare genetic disease before it even had a name. He was just two when his mother first noticed his symptoms, swelling in his legs. Later, he also experienced hearing loss and a severe vulnerability to infections. It would be years before the genetic testing needed to […]

Saving Eddie’s Sight

Eduardo, 59, a successful vegetable producer lost his business and home in Texas due to a rare eye disorder that causes the muscles around his eyes to spasm and his eyes to close involuntarily. The disorder has left him functionally blind. The unusual disease, blepharospasm, initially attacked him without warning when he was driving with […]

Meghan’s Search for a Cure

Meghan has a rare and life-threatening genetic disease, Dock8 deficiency. The disease, itself, was only recently discovered in 2009. Like many genetic diseases, the discovery and possible treatments were made possible by the mapping of the human genome led by Dr. Francis Collins, now Director of the NIH. All her life, Meghan has had hundreds […]

Danielle is Counting on Us

20 year-old Danielle has been a patient at the National Institutes of Health (NIH) since she was 10. She’s now facing a kidney transplant, and the life-altering chance to be free of dialysis. She’s one of the many patients and families Friends of Patients is helping this year as they navigate critical treatment at the […]

Grateful Patient and Family Program

Kathleen and Dr. Chris Adelman walk miles inside the Clinical Center daily when they are at the NIH for appointments or hospitalizations. They try to clock 10 to 16K steps a day. On a recent tour of the floors, they saw the Friends at NIH banners, and stopped in to ask how they can help. […]

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