NKI is kicking off its Community Café tour! Visiting cities like Stamford, CT, Birmingham, AL, and Miami, FL., there is sure to be a café near you. Click here to see when and where these FREE patient education seminars are happening. Don’t miss this chance to get up close and personal with leading experts in the field while enjoying kidney-healthy food.
President Obama signed the appropriations package to fund federal agencies through fiscal year 2015 (ending September 30, 2015). This includes allocations for NIH and other health care funding agencies such as the Department of Defense (DoD), which oversees the Peer-Reviewed Medical Research Program (PRMRP).
For the first time, FSGS is listed as a condition eligible to study in the PRMRP. Because FSGS is listed, FSGS researchers have an opportunity to compete for grants from a NEW funding source. This is HUGE. This opportunity is a direct result of NephCure’s professional and volunteer advocacy work in Washington, D.C. and the efforts of our staff to work collaboratively with scientific partners at NIH and the VA to highlight the benefits of studying this disease through the DoD program. The total amount in the PRMRP program is $247.5 MILLION!
The Program Announcement was released April 17 for the 2015 cycle. There are five funding mechanisms available. Click here for details.
NephCure Kidney International is pleased to announce the development of a new nephrologist position at NIDDK. A tenure track position is available for a nephrologist to establish an independent research program in the Kidney Disease Section, Kidney Diseases Branch, NIDDK, NIH. The search is particularly focused on individuals studying glomerular physiology or glomerular disease. Research in this section focuses on mechanisms and therapy of glomerular disease under the leadership of Jeffrey Kopp, MD.
- MD degree
- Demonstrated expertise and a record of achievement in basic or clinical research
- Current board certification in Nephrology
- Excellent clinical nephrology skills
- Have or be eligible to obtain a current US medical license.
The position will be supported with independent resources commensurate with experience and programmatic needs, including positions for clinical staff, pre-doctoral and post-doctoral fellows, and a budget for consumables and equipment.
Interested applicants should submit a single PDF document containing a Curriculum Vitae, a list of publications, a summary of research accomplishments, a plan for future research including a core research question, the names and contact information of three people who are submitting letters of reference, and copies of no more than 3 publications.
All materials should be emailed to:
Dr. Mark Knepper, Chair, Kidney Disease Branch Search Committee
c/o Lisa Swearinger
In mid-November, Mark Stone, NephCure Kidney International Acting CEO, attended the sixth annual Partnering For Cures Conference in New York City. The Partnering For Cures Conference is a patient-focused event that brings together leaders from all sectors of medical research to foster collaboration – collaboration that will lead to medical discoveries, and, ultimately, treatments and cures.
Partnering For Cures is hosted by FasterCures, a Washington, DC-based center of the Milken Institute. FasterCures hosts the conference each year to convene groups like NephCure to identify partnership opportunities and advance outcomes-driven medical research. At the core of Partnering For Cures is the idea that the cultivation of cross-sector relationships will lead to collaborative efforts necessary for the development of new therapies.
This year’s conference focused on the importance of patient-reported data and how determined patients are improving and accelerating the search for cures. “Patient empowerment is at the heart of what we do at NephCure,” says Mark Stone. “Conferences like Partnering For Cures help groups like NephCure influence research innovations and remind us of the most important aspect of our research – our patients.”
Have you ever participated in a clinical research study? Are you willing to share your experience with others? If so, then you would make a fantastic addition to our newest initiative to find better treatments and a cure for Nephrotic Syndrome: the Clinical Trials Ambassador Program! NKI is seeking volunteers from across the country to act as Ambassadors to other patients and the medical community. Ambassadors will spread knowledge and information about the importance of clinical research in the search for better treatment options and a cure.
Ambassadors can expect to spend between 5 and 10 hours a month volunteering in various ways that will help spread awareness and knowledge about clinical research. If you are interested in learning more about the Clinical Trials Ambassador Program, contact Chelsey Fix at email@example.com.
NephCure Kidney International Introduces Clinical Research Map
October 14, 2014
We are excited to introduce a new user-friendly, interactive clinical research map. This map includes current clinical research sites and studies available to patients affected by FSGS and other Nephrotic Syndrome diseases. The map, which can be found here, will help patients sort through studies available to them. Categories include studies specific to adults, pediatrics, Nephrotic Syndrome, and FSGS, to name a few.
“Patient participation is key to advancing research and treatment options available to patients,” says Marilyn Hailperin, the National Director of Research at NephCure. “This site map allows patients to view studies underway in their area.”
This map is another way NephCure is living out our mission to support research seeking the causes of Nephrotic Syndrome diseases, to improve current treatments and, ultimately, to find a cure. Here at NephCure, we value the supportive role we play for our patients. Spreading the word about clinical research to our patients is a crucial aspect of this role, because, after all, patients power research!
Link to the map: here.
For more information about the risks and benefits of participating in clinical research, click here.
We are pleased to share that Kathleen Broderick and Randall Snyder were recommended and have accepted their nominations as Steering Committee Co-Chairs for the NephCure Kidney Network (NKN). Kathleen was considered a strong candidate due to her dual experience as a patient caregiver as well as a patient advocacy representative. Similarly, Randy’s dual perspective as a patient caregiver and clinical provider give him unique insight relevant to the NKN.
Kathleen is a member of the NephCure Board of Directors and Research Committee and an editor at DeGruyter Publishing, a Science, Technology, and Medicine (STM) publisher of professional books and scholarly journals in Boston, Massachusetts. Additionally, Kathleen cares for her 16-year-old son, who was diagnosed with Nephrotic Syndrome at 20 months.
Randy is an interventional radiologist with his master’s in molecular biology living in Medford, New Jersey, who cares for his son who was diagnosed with focal segmental glomerulosclerosis.
Kathleen and Randy will be facilitating Steering Committee calls and communication moving forward. Please join us in welcoming Kathleen and Randy as the inaugural NKN Steering Committee Co-Chairs!