NETE’s Big Heart Gives Patients a Home

It’s a crisis when the cost of a hotel or apartment near the NIH means patients risk dropping out of treatment trials. Jolly Somaiya, President and Founder of NET eSolutions (NETE), and Friends’ Board Member, Sandeep Somaiya are deeply committed to ensuring that doesn’t happen. Jolly presented a generous check to Friends’ at a recent […]

Two Women’s Stories of Treatment, Waiting… and Hope

Meet Madalynn, 22 years old from Woodsboro, TX. A young mother of a baby girl, a student, and a Texas hurricane survivor. 49 days! Madalynn counts down the days from her bone marrow transplant when, barring complications, she hopes to return home to see her 8-month old baby girl. She’s from a small town near […]

Friends Leads the Race for Relapsing Polychondritis Patients

Friends at NIH is partnering with the Relapsing Polychondritis Awareness and Support Foundation (RPASF) in New York City to provide transportation support to patients for travel expenses to the NIH so they may participate in the groundbreaking study of this rare disease. To learn more visit: http://www.polychondritis.org/patient-support/ “Relapsing polychondritis is a disease that few people […]

Save the Dates for Golf and Friends Night Out 2019

Friends’ 11th Annual Golf Tournament Thursday, May 2, 2019 Enjoy golf on a premiere course, barbecue lunch and prizes. Registration and sponsorships open soon. Friends’ Night Out An Evening to Celebrate Thursday, October 24, 2019 Enjoy food, drinks and special musical entertainment for an evening of fun and friendraising. Watch for registration and sponsorships soon. […]

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 […]

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