Several thousand rare diseases affect an estimated 30 million people in the United States. Yet only about 5 percent of these diseases have a treatment approved by the Food and Drug Administration. On Feb. 28, 2019, the National Institutes of Health joins the global day of awareness to host Rare Disease Day at the NIH, […]
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. […]
Supporters help patients in so many creative ways. Mina Jain, Research Coordinator in the NIH Clinical Center Physical Therapy Department asked her holiday party guests to bring gift cards instead of hostess gifts to donate to Friends’ patients and families. Mina delivered the bagful of colorful gift cards recently to Program Manager Therese Draddy. The […]
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 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 […]
Leadership Montgomery has named Friends of Patients at the NIH and the NIH Federal Credit Union (NIHFCU) as the winner of its “Partnership of the Year Award.” The program honors outstanding local businesses for employee engagement programs in the community. “As a charity organization with a small staff, we couldn’t succeed without the extensive volunteer […]
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 […]
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, 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 […]
