NephCure and MedLive Offering Free Webinar on IgA Nephropathy June 5, 2023 by Delaney Geraghty Leave a Comment NephCure is teaming up with MedLive to offer a new, live webinar focused on IgA nephropathy (IgAN). Register to join us on Tuesday, June 20 at 3 p.m. ET for “Knowledge Is Power: The Information You Need to Recognize Your Risk and Early Signs of Kidney Disease and Take Action to Optimize Your Treatment.” MedLive is an online education platform dedicated to providing reliable health information that supports shared decision-making with care teams and improved health outcomes. Featuring an expert panel comprised of a nephrologist, patients, and patient advocates, this presentation will cover how to get an early diagnosis, what the experts say about IgAN, the ins-and-outs of the available treatment options, and what discussions to have with your doctor. They’ll also explore the role of the kidneys and discuss why early kidney screenings are critical to ensuring medical care begins before any irreversible loss of kidney function occurs. Dr. Michelle O’Shaughnessy, Consultant Nephrologist at University Hospital Galway in Ireland, will present. At the end of the presentation, the panel will take questions from the audience in a live Q&A. Experts recommend certain strategies for managing IgAN, such as reducing proteinuria and controlling blood pressure. These strategies aim to save your kidneys and delay the disease progression. There are also newer medications that may help with IgAN and pipeline agents that may help delay the need for dialysis. “Our goal is to empower patients with the information they need to make informed decisions about their care and preserve the health of their kidneys,” said Kelly Helm, NephCure’s Executive Director of Patient Engagement. “We invite everyone to join us for this free webinar to learn about IgAN and how you can take control of your kidney health!” Learn more and register for the webinar here.
Travere Therapeutics Announces Results from DUPLEX Study in FSGS May 2, 2023 by Kylie Karley KING OF PRUSSIA, Pa. (MAY 2, 2023) — Travere Therapeutics announced Monday results from their Phase 3 DUPLEX Study, which tests the drug sparsentan in focal segmental glomerulosclerosis (FSGS) patients. While the DUPLEX Study did not achieve its primary endpoint goal for eGFR, the results of its secondary endpoints provide encouragement. At the end of the 108-week long study, the eGFR total slope compared to the control drug, irbesartan, did not reach its goals to show statistical significance. However, the results also showed: An average of 50% reduction in proteinuria during the treatment. More than 2x greater remission rate — 18% of patients on sparsentan achieved complete remission, vs. only 7% on irbesartan. The results from the DUPLEX Study also indicated that sparsentan was well-tolerated, with a consistent safety profile comparable to irbesartan. Additionally, patients anecdotally reported a reduction in edema (more information on this to come as additional data is published). “FSGS is a particularly aggressive form of kidney disease that currently does not have any FDA-approved treatments. There is a high unmet need for treatment options for those affected by FSGS. Ensuring patients have choices about the medications they take is of the utmost importance,” said Josh Tarnoff, NephCure’s CEO. “NephCure has always stressed the significance of stopping the disease and reducing protein in the urine — and sparsentan is showing to do that based on these results.” According to Travere Therapeutics, the company will continue to explore a potential path forward with the FDA for a New Drug Application (NDA). To learn more about the DUPLEX Study results, read Travere’s press release here. To see a full list of clinical trials in the rare kidney disease space, visit KidneyHealthGateway.com.
NephCure Joins Enon Tabernacle’s Men’s Health Initiative April 19, 2023 by Kylie Karley Brings Kidney Disease Screening and APOL1 Genetic Testing to Event KING OF PRUSSIA, PA (APRIL 19, 2023) — NephCure, a nonprofit focused on finding better treatments and a cure for rare kidney disease (RKD), is partnering with Enon Tabernacle Baptist Church as they host their 12th annual “Men Know Your Numbers” health education and screening event on April 22 from 8 a.m. to 6 p.m ET. During the event, the Church, located at 2800 W. Cheltenham Ave. in Mount Airy, transforms their house of worship into a men’s health and wellness clinic. This year, NephCure is working with the University of Pennsylvania chapter of the Kidney Disease Screening and Awareness Program to offer on-site urine screening for kidney disease. Additionally, in collaboration with Labcorp, NephCure will bring the first-ever genetic testing opportunities for APOL1 kidney disease, a recently discovered rare condition that puts 1 in 8 Black and African Americans at risk for a genetic form of kidney disease. The event with Enon Tabernacle also serves as the kick-off of NephCure’s RKD Screening Campaign, an ongoing effort to provide kidney disease education and screening opportunities in targeted locations nationwide. NephCure also works closely with local nephrologists who are experts in rare kidney disease to assist and oversee screening events and provide connections to clinical research opportunities and innovative treatment options. NephCure is proud to recognize Travere Therapeutics as a Platinum Partner of NephCure’s RKD Screening Campaign. Additional sponsorship support has been provided by Boehringer Ingelheim, Natera, and Mallinckrodt Pharmaceuticals. “Collaborations work! It has been our experience over the years when we partner with others of like mind, outcomes are improved. NephCure’s mission which includes addressing healthcare concerns upstream, aligns with our commitment to be proactive and preventative in our approach to health and wellness. This type of creative collaboration has yielded very positive results. We believe in holistic care the mind, the body, and the spirit,” the Rev. Leroy Miles said, Enon Tabernacle’s Associate Pastor of Sanctification. APOL1 kidney disease is particularly aggressive and currently has no FDA-approved treatments. It primarily affects individuals of African descent. Enon Tabernacle’s “Men Know Your Numbers” health education and screening event welcomes all men over the age of 18 to participate and receive free screenings for not only kidney function, but also for blood pressure, cholesterol, blood sugar, prostate cancer, colon cancer, mental health, and more. In addition to the health and wellness portion of the event, a “man cave” will also be set up which includes video games, card games, and free barber services. To learn more about the event, visit EnonTab.org. For more information about APOL1 kidney disease, visit NephCure.org. About NephCure: NephCure’s mission is to empower people with rare, protein-spilling kidney disease to take charge of their health, while leading the revolution in research, new treatments, and care. Founded in 2000 by a group of committed patient parents, NephCure has invested more than $40 million in kidney disease research and helped create a landscape where there are now new treatments and more than 60 interventional drug trials for rare kidney diseases. NephCure is a U.S. tax exempt 501(c)(3) public charity. About Enon Tabernacle: Enon Tabernacle Baptist Church is a congregation of over 12,000 members. Enon holds two weekend worship services (with internet live-streaming), multiple prayer opportunities, and weekly Bible studies in the Mt. Airy and Germantown sections of Philadelphia. Reverend Dr. Alyn E. Waller, Senior Pastor draws on his love for people to shape God’s vision for Enon, “A Place Where People Encounter God,” through over 75 innovative ministries. Enon regularly hosts various community awareness events and health and wellness initiatives that offer critical health screenings, including exposure to cutting edge medical innovations.
NephCure Unveils New Branding March 31, 2023 by Kylie Karley Reflecting Organization’s Focus on Rare Kidney Disease KING OF PRUSSIA, PA (March 31, 2023) — NephCure, formerly NephCure Kidney International, announced Friday a new visual and written brand more distinctly centered around the rare kidney disease (RKD) community they serve. With nearly a year of research and development behind it, this new brand more accurately reflects the nonprofit’s unique position in the RKD space, as well as the explosive growth and transformation the RKD field has seen over the past several years. With this incredible growth, NephCure has entered a new era, and now has the opportunity to reach and support more people affected by RKD across the world. Through robust research, the patient advocacy organization discovered how critical it is to distinguish their brand, allowing those who may be new to the community to understand NephCure’s direct connection to RKD and collective goal to find a cure. “We are extremely proud to unveil our new branding. It not only represents the wave of innovation in the rare kidney disease space that NephCure, researchers, industry partners, and other key stakeholders have helped cultivate together, but also encapsulates the incredibly special community fostered at NephCure,” said NephCure’s CEO, Josh Tarnoff. “We are on the cusp of monumental breakthroughs in rare kidney disease research. New treatments and innovations are upon us, and our updated branding now conveys this cutting-edge shift taking place.” Unique among the major kidney organizations, NephCure is squarely focused on nephrotic syndrome, FSGS, IgAN, and other rare, protein-spilling kidney diseases. NephCure acts as the connector amongst patients and families, healthcare providers, government agencies, industry partners, and other key stakeholders, while also guiding patients to the best care and treatment options possible. “We’ve listened to you — our valued community of patients, caregivers, volunteers, researchers, and other key supporters — through extensive rounds of interviews, surveys, and analysis to ensure that everyone who is a part of our community feels represented, understood, and, ultimately, inspired for progress,” said Kylie Karley, NephCure’s Marketing & Communications Director. Initial elements of NephCure’s brand evolution include: New Logo: The new NephCure logo represents community and togetherness. Featuring a modern spiral of cascading lines that converge together to form a kidney, it demonstrates NephCure’s focus on facilitating connections within the RKD community. This shape also doubles as a “spark,” representing NephCure’s position of leadership and innovation in the nephrology field as they work to advance rare kidney disease research toward more effective treatments. Shortened Name: Through comprehensive research, it was discovered that “NephCure” by and large was the most prevalent name people used to refer to the organization. Since there was high awareness and equity in this specific part of the former name, they decided to officially shorten it to simply “NephCure,” while also developing a supporting tagline to further clarify their mission. New Tagline: “For rare kidney disease” reflects NephCure’s distinct focus on RKD, as well as their passion and focus to continuously strive to find a cure. New Vision Statement: “A world where all who are affected by rare, protein-spilling kidney disease are connected to new and better treatments — and one day, a cure.” New Mission Statement: “To empower people with rare, protein-spilling kidney disease to take charge of their health, while leading the revolution in research, new treatments, and care.” For the second phase of NephCure’s rebranding work, the organization plans to update its website, NephCure.org, to reflect the new brand updates that have gone into effect today. NephCure will continue to update its community on the status of this website redesign. To learn more about NephCure’s new visual and written branding, visit brand.nephcure.org. About NephCure: NephCure’s mission is to empower people with rare, protein-spilling kidney disease to take charge of their health, while leading the revolution in research, new treatments, and care. Founded in 2000 by a group of committed patient parents, NephCure has invested more than $40 million in kidney disease research and helped create a landscape where there are now new treatments and more than 60 interventional drug trials for rare kidney diseases. NephCure is a U.S. tax exempt 501(c)(3) public charity. ###
NephCure Action Network Members Help Enact Sections of New Era Bill into Law March 3, 2023 by Kylie Karley NephCure thanks our NephCure Action Network (NCAN) members for helping to make our end-of-year legislative accomplishments possible. As 2022 and the 117th Congress drew to an end, Congress passed its fiscal year (FY) 2023 funding through an omnibus package, which included some hard-fought NephCure policy priorities. The key to this accomplishment was the collaborative effort between the advocacy team, external partners, and most of all, NephCure’s community of stakeholders — including patient volunteers, families, health care professionals, and researchers. Their meetings, phone calls, letters, and other grassroots activities helped educate lawmakers about rare kidney disease (RKD) and the need for improved funding for research, treatments, and health care services. Within the omnibus package, focal segmental glomerulosclerosis (FSGS) and nephrotic syndrome were included as eligible conditions to participate in the Department of Defense Peer-Reviewed Medical Research Program (DOD PRMRP). The DOD PRMRP was established in 1999 to support research across the full range of science and medicine, with an underlying goal of enhancing the health, care, and wellbeing of military service members, veterans, retirees, and their family members. It continues to serve as an additional avenue for accelerating critical research on rare kidney diseases for the development of lifesaving treatments for patients. The omnibus package also included more than $120 billion to fund initiatives supported by NephCure, including organ transplantation, chronic disease education, and minority health and health disparities, among others. In addition to these wins, two sections taken from the New Era for Preventing End-Stage Kidney Disease Act, which was introduced in Congress last year, were also included and enacted into law! In the first section, “Diversity in National Institutes of Health (NIH) Kidney Disease Research Populations,” the Appropriations Committee directs the NIH to submit an update on its research related to kidney disease, including research focusing on health disparities in the prevention, diagnosis, and treatment of kidney disease among racial and ethnic minority populations, in the FY 2024 Congressional Justification. The second section, “Rare Kidney Diseases in Health Equity Initiatives,” requests the United States Department of Health and Human Services (HHS) to provide an update on disparities in kidney care and the inclusion of rare kidney diseases in policies and programs aimed at eliminating health disparities in communities of color. The HHS must also submit this update in the FY 2024 Congressional Budget Justification. Submitting these budget justifications ensures that the agencies are being held accountable for the funds they were given. Congress also requested that both the NIH and HHS provide updates in specific program improvements in the FY 2024 Congressional Budget Justification on disparities in kidney care and the inclusion of rare kidney diseases in policies and programs aimed at eliminating health disparities in communities of color. NephCure and its partners will be closely monitoring implementation of funding for these programs in the coming months. NephCure’s advocacy team is currently working with the new members of Congress and other organizations to prepare our policy priorities. Stay tuned for a robust grassroots effort engaging members in various activities, including our second annual Rare Kidney Disease Week this July. Once again, we thank our community for your commitment and support to helping advance legislative and policy priorities that would improve the lives of those living with rare, protein-spilling kidney disease. You can learn more and join the NephCure Action Network here. NephCure encourages its members to spend time getting to know their representative and senators.
NephCure Celebrates National Kidney Month with Bingo Challenge March 1, 2023 by Des Lalonde NephCure is proud to celebrate National Kidney Month each March, and we’re excited to present something extra special this year. Our goal is to continue raising awareness of rare kidney disease, empowering patients and families in their journey, and working toward finding better treatments — and one day, a cure. How To Get Involved Let the games begin! NephCure has created the Kidney Month Bingo Challenge — a bingo card full of activities for you and your family throughout the month. Complete various activities and mark them off on your card as you go to collect ‘bingo’! You’ll need to complete five activities in a row, column, or diagonal to win. Download the bingo card and see our full Kidney Month Bingo Challenge activity list here. These activities aim to inspire you along your journey, empower you to share your story living with rare kidney disease, and encourage you to step outside of your norms and take action in the community. Submit your card with at least one complete bingo row by Friday, March 31 to receive a NephCure prize! Make sure to fill out this form when you are finished with your Kidney Month Bingo Challenge. All Kidney Month Bingo Challenge activities and instructions can be found here. Use #NephCureKidneyMonth March 1 – 31 We invite you to participate in the activities we have set throughout the entire month of March, and to join us on social media in the #NephCureKidneyMonth campaign. As you complete your Kidney Month bingo card activities, you’ll notice some require you to post online. When you do so, make sure you use the hashtag #NephcureKidneyMonth so we can see what you’ve done! The campaign is intended to spread awareness of NephCure’s services and programs for rare kidney disease patients. Don’t forget when you post your photos to tag @NephCure too! Make sure to follow along on our Facebook and Instagram pages to see more resources and information for our Kidney Month campaign and Bingo game! Quick Kidney Facts Did you know that approximately 1 in 7 U.S. adults are affected by chronic kidney disease? That’s nearly 37 million people! Your kidneys support and regulate many systems in your body, including: Regulating blood pressure and fluid levels. Balancing minerals in the blood stream. Filtering out waste materials and removing waste from blood. Directing the production of red blood cells. Kidney disease, sometimes referred to as renal disease, is the general term for damage that reduces function of the kidney. Chronic kidney disease (CKD) occurs when kidneys are no longer able to clean toxins and waste product from the blood and perform their functions to full capacity. Some symptoms of kidney disease are non–specific, meaning other illnesses can cause them. Sometimes, signs and symptoms may not appear until irreversible damage has occurred. Kidney disease symptoms can include: High blood pressure High cholesterol Foamy or bubbly urine Puffiness around the eyes Fatigue Nausea Loss of appetite Trouble sleeping Frequent urge to urinate Blood in the urine Feeling faint or dizzy Swelling in the ankles and feet Pressure when you urinate Thank you to our sponsors for making NephCure’s Kidney Month possible.
FDA Grants FILSPARI Accelerated Approval for the Treatment of IgA Nephropathy in Adults February 17, 2023 by Kylie Karley Today marks an incredibly promising day for the rare kidney disease (RKD) community: the FDA has announced that the drug FILSPARI (sparsentan) has been granted accelerated approval for the treatment of IgA nephropathy in adults. The FDA’s accelerated approval program allows for earlier approval of drugs that treat serious conditions and fill an unmet medical need. FILSPARI has been granted accelerated approval based on reduction of proteinuria. It is not yet known if the drug slows kidney function decline in IgAN patients. Over the next several months, Travere Therapeutics, the company that developed FILSPARI, will share more information about this new treatment and explain when and how those who need the drug can access it. “This is the moment we’ve all been working toward. FILSPARI’s FDA approval for IgA nephropathy is monumental for the entire rare kidney disease community. Today marks the start of a new era for the treatment of RKD — it is a testament to the research community’s and Travere’s commitment to our patients,” said Josh Tarnoff, NephCure’s CEO. “Our collective community is incredibly proud to reach this point, but we know the next phase of our vital work now begins: ensuring those who need this drug have access to it in time to save their kidneys. We’ve waited so many years for this treatment. Today’s FDA approval provides a beacon of hope that more needed new treatments are likely to be available soon.” The continued approval of FILSPARI may be dependent upon the data from Travere’s ongoing phase 3 PROTECT study. This study evaluates the drug in more than 400 patients with persistent proteinuria. After 36 weeks of treatment, patients receiving the drug achieved a nearly 50% reduction in proteinuria. While this is a new era for RKD patients and their families, we know that we still have a long way to go. FILSPARI is also being studied in FSGS patients, and it could be approved for the treatment of FSGS within the next year. With more than 60 clinical trial opportunities for RKD patients, even more new treatments are likely to be approved in the near future. We celebrate today, but we know we have not crossed the finish line yet. We must keep pushing research forward so we can continue to improve health outcomes for RKD patients. As Josh mentioned, we’re now facing a new challenge — ensuring all patients have timely and equitable access to these new and better treatments. We remain focused on our mission to empower people with rare, protein-spilling kidney disease to take charge of their health, while leading the revolution in research, new treatments, and care. We thank you for your incredible support that has helped us get to this day, and we are grateful for your continued dedication to our mission.
NephCure Wins Gold at the 2nd Annual Anthem Awards February 15, 2023 by Kylie Karley Honored for Best Health Nonprofit Campaign KING OF PRUSSIA, Pa. (Feb. 15, 2023) – NephCure is excited to announce the organization’s awareness campaign, ‘On the Rebound: Alonzo Mourning’s Kidney Disease Journey,’ is a Gold Winner in the 2nd Annual Anthem Awards in the Health Nonprofit category. Chronic kidney disease (CKD) is a national epidemic, with more than 1 in 7 U.S. adults affected. People of color are disproportionately affected by CKD due to genetic risk factors, as well as social determinants of health. APOL1-related kidney disease, caused by a mutation on the APOL1 gene, is an especially aggressive form of CKD—approximately 40% of African Americans on dialysis have kidney failure caused by APOl1. In highlighting Alonzo Mourning’s personal kidney disease story, NephCure aimed to reach those who are at risk for CKD, raise awareness of rare forms of kidney disease, and educate the public, especially the Black community, about the signs and symptoms of these conditions for earlier diagnoses and treatment. After creating the video with Mourning in the fall of 2021, NephCure launched a digital campaign in December 2021 in support of their Health Equity Initiative and awareness campaign, sharing the video as well as informational resources to help people better understand their risk and disease management. The campaign was distributed via Instagram, Facebook, and YouTube, and focused on the 5-minute video of Mourning telling his own story of being diagnosed with kidney disease just after playing in the 2000 Olympics. He shares his kidney disease journey, the physical and emotional impact, and his advice for others at risk. “Since launching this platform in June of 2021, we have seen that social change has emerged as a dominant force in mainstream culture,” said Jessica Lauretti, Anthem Awards Managing Director. “The sheer number, breadth and overall quality of the entries shared with us in the 2nd Annual Awards is a testament to the strength of this growing movement and demonstrates an enduring commitment to the work that is both humbling and inspiring to see. From the war in Ukraine, to protests in Iran and the ongoing battle for equality here at home in the States, the call for change not only perseveres but is a growing global chorus.” The Gold Anthem Award is accepted by the NephCure team members who led this campaign— Kylie Karley, Director of Marketing and Communications, and Delaney Geraghty, Manager of Marketing and Communications. “It’s an honor, and incredibly humbling, to be recognized by the Anthem Awards for the work we’ve been doing to raise awareness of the risk for CKD and APOL1-related kidney disease. We are passionate about ensuring equitable kidney health care for everyone, everywhere, and know our work in this space does not end here, but rather only begins,” said Karley. Winners for the 2nd Annual Anthem Awards will be celebrated at the Winners Celebration on Feb. 27 in New York City. Fans can hear from social impact leaders and listen to their hallmark speeches at www.anthemawards.com. The Anthem Awards was launched in response to the prevalence social good has taken within the national conversation and cultural zeitgeist in recent years. The 2nd Annual competition received nearly 2,000 entries from 43 countries worldwide. By amplifying the voices that spark global change, the Anthem Awards are defining a new benchmark for impactful work that inspires others to take action in their communities. A portion of program revenue will fund a new grant program supporting emerging individuals and organizations working to advance the causes recognized in the 2nd Annual Anthem Awards. Anthem Winners are selected by the International Academy of Digital Arts and Sciences. Members include: Nicholas Thompson, CEO, The Atlantic, Christina Swarns, Executive Director, Innocence Project, Zarna Surti, Global Creative Director, Nike Purpose, Maurice Mitchell, National Director, Working Families Party, Lindsay Stein, Chief Purpose Office, Tombras, Jennifer Lotito, President & Chief Operating Officer, (RED), Lisa Sherman, President & CEO, The Ad Council, Emily Barfoot,Global Brand Director Dove, Unilever, Trovon Williams, Senior Vice President of Marketing and Communications, NAACP, Roma McCaig, Senior VP of Impact, Clif Bar, Michelle Egan, Chief Strategy Officer, NRDC, Dinah-Kareen Jean, Senior Manager, Social Innovation, Etsy, Sarah Kate Ellis,President & CEO, GLAAD, Jad Finck, Vice President of Innovation & Sustainability, Allbirds, Christopher Miller, Head of Global Activism Strategy, Ben & Jerry’s, Shayla Tait, Director of Philanthropy The Oprah Winfrey Charitable Foundation. About NephCure: NephCure’s mission is to accelerate research for effective treatments for nephrotic syndrome, FSGS, and other forms of rare, protein-spilling kidney disease, and to provide education and support that will improve the lives of those affected by these conditions. Founded in 2000 by a group of committed patient parents, NephCure has invested more than $40 million in kidney disease research and helped create a landscape where there are now more than 60 interventional drug trials for primary glomerular kidney diseases. NephCure is a U.S. tax exempt 501(c)(3) public charity. About The Anthem Awards: Launched in 2021 by The Webby Awards, The Anthem Awards honors the purpose & mission-driven work of people, companies and organizations worldwide. By amplifying the voices that spark global change, we’re defining a new benchmark for impactful work that inspires others to take action in their own communities. The Anthem Awards honors work across seven core causes: Diversity; Equity & Inclusion; Education; Art & Culture; Health; Human & Civil Rights; Humanitarian Action & Services; Responsible Technology; and Sustainability, Environment & Climate. Founded in partnership with the Ad Council, Born This Way Foundation, Feeding America, Glaad, Mozilla, NAACP, NRDC, WWF, and XQ. About The Webby Awards: Hailed as the “Internet’s highest honor” by The New York Times, The Webby Awards is the leading international awards organization honoring excellence on the Internet, including Websites; Video; Advertising, Media & PR; Apps, Mobile, and Voice; Social; Podcasts; and Games. Established in 1996, The Webby Awards received more than 13,500 entries from all 50 states and 70 countries worldwide this year. The Webby Awards are presented by the International Academy of Digital Arts and Sciences (IADAS). Sponsors and Partners of The Webby Awards include Verizon, WP Engine, YouGov, Brandlive, Canva, NAACP, KPMG, Fast Company, Wall Street Journal, MediaPost, Podcast Movement, and AIGA.
NephCure’s Patient Navigation Services: Meet Montrez Lucas, LCSW February 10, 2023 by Des Lalonde We are very proud to introduce the NephCure Patient Navigation Program, a key component in helping the rare kidney disease (RKD) community get the answers and care they need, and Montrez Lucas, LCSW, is leading the way. Montrez Lucas, Associate Director of Patient Navigation Montrez, NephCure’s Associate Director of Patient Navigation, is a licensed social worker who helps patients, caregivers, and care partners navigate through healthcare services and systems. Before coming to NephCure, Montrez led a team of social workers at Emory University Hospital in Atlanta. In his role, Montrez offers a resources, guidance, and hope to our community. By offering practical support as well as building helpful and lasting relationships, he ensures RKD patients and families have help navigating the uncertain rare kidney disease journey. Learn more about our Patient Navigation Program in this Q&A with Montrez. What is patient navigation? ML: Patient navigation is used to help patients and care partners navigate through healthcare services and identify problems they may face. These services offer helpful resources they may not have immediate access to, reduce health disparities in the community, and empower patients to receive the care they deserve, while receiving support from someone they can trust. How does this program serve caregivers and partners? ML: The program serves caregivers and partners by giving them access to resources to pass along to their loved ones and providing lasting support in a timely manner to assure they can continue to provide the best care to the patient. It is my duty to keep care partners up to date on how to best serve patients and guiding them to better patient care. The patient journey is important, but care partners serve an important role in every patient’s life. Why are patient relationships important to you? ML: I build relationships with patients and families to help guide them and solve the problems they are facing. Each patient is just as important as the next, which is why supporting them through the process of navigating healthcare systems and their general issues is vital. Building relationships with patients provides them the support they need to promote positive health behaviors and establishes trust. Patients and caregivers deserve to have a great relationship with someone they can rely on to give them the best resources, bring them closer to their goals, and resolve the issues they have. How can these navigation services help patients and families? ML: Navigating through the disease journey can be stressful, especially when conquering it alone. Patients should use these resources if they find themselves needing support. We will be able to provide patients with necessary resources for their journey, and connect them with the right tools, including informative events, webinars, support groups, and more. They’ll also receive assistance in healthcare access, school support services, medication assistance programs, and access to experts that can put them on the right track. The goal is to get to the patient before it’s too late. Learn more about NephCure’s Patient Navigation Program and connect with Montrez here.
NephCure Kidney International Announces New Scientific Advisory Board Co-Chairs December 12, 2022 by Kylie Karley KING OF PRUSSIA, Pa. (Dec. 12, 2022) — NephCure Kidney International (NephCure) is excited to announce new co-chairs for the organization’s Scientific Advisory Board (SAB): Alessia Fornoni, M.D., Ph.D., and Matthias Kretzler, M.D. Alessia Fornoni, M.D., Ph.D. Drs. Fornoni and Kretzler, expert glomerular disease nephrologists who actively serve on NephCure’s SAB, will assume the roles of co-chairs following the term completion of former chairman Martin Pollak, M.D. “Dr. Fornoni and Dr. Kretzler have been indispensable partners of NephCure and the rare kidney disease research and care community, and we’re honored that they have agreed to lead our SAB,” said Josh Tarnoff, NephCure CEO. “Their combined ‘extensive research bench to bedside care’ experience and expertise have provided tangible progress and hope to the kidney community, an integral part of our mission. We are grateful for their passion and leadership to help push glomerular disease research and treatment forward.” Dr. Fornoni is a Professor of Medicine and Molecular and Cellular Pharmacology at the University of Miami Miller School of Medicine. She is the Chief of the Katz Family Division of Nephrology and Hypertension and serves as and Director and Chair of the Peggy and Harold Katz Drug Discovery Center. Through her pioneering work on insulin signaling, cholesterol metabolism and sphingolipid-related pathways, Dr. Fornoni uncovered novel pathogenetic mechanisms and therapeutic approaches for glomerular disorders. Dr. Kretzler is the Warner-Lambert/Parke-Davis Professor of Medicine/Nephrology and Computational Medicine/Bioinformatics at the University of Michigan. For the last 35 years of his life, he has focused his research efforts on studying glomerular failure and finding novel ways to treat it. Dr. Kretzler’s work has helped to redefined glomerular diseases in mechanistic terms. This framework is a driving force to develop and test novel precision medicine strategy for people with kidney disease, and hopefully bring the right drug to the right patient at the right time. Matthias Kretzler, M.D. Dr. Pollak, the previous chairman of the SAB, is a leader in the research of the genetic basis of rare kidney disease. His research lab discovered the genetic tie between people of African descent and focal segmental glomerulosclerosis (FSGS), a groundbreaking finding that has helped explain why Black Americans have a higher risk of kidney disease. Dr. Pollak continues working to identify genes involved in the development of FSGS in minority populations. Although he will be stepping down as chairman, Dr. Pollak will continue to sit on the SAB and serve the rare kidney disease community. Rare kidney disease is experiencing a revolution in research breakthroughs, care, and significantly expanded interest, which has led to NephCure’s responsibilities and programming significantly increasing. The addition of co-chairs reflect this important role to the SAB not only due to the responsibilities hosted in the position, but to help pave a way for new research in the kidney community. To receive more NephCure news and updates, sign up for our monthly newsletter here. About NephCure Kidney International NephCure Kidney International’s mission is to accelerate research for effective treatments for nephrotic syndrome, FSGS, and other forms of rare, protein-spilling kidney disease, and to provide education and support that will improve the lives of those affected by these conditions. Founded in 2000 by a group of committed patient parents, NephCure has invested more than $40 million in kidney disease research and helped create a landscape where there are now more than 60 interventional drug trials for primary glomerular kidney diseases. NephCure is a U.S. tax exempt 501(c)(3) public charity.