March is National Kidney Month March 1, 2022 by Lauren Eva Raise Awareness During National Kidney Month March is all about the kidneys! To spread awareness about kidney disease and honor those who are affected by it, we welcome you to download our NephCure National Kidney Month graphics and share across your social media channels. Download our social media graphics here. #SockItToKidneyDisease on March 10th Additionally, we invite you to wear your craziest pair of socks on World Kidney Day, March 10th, to join us in the #SockItToKidneyDisease campaign. One of the first signs of kidney disease many notice is swelling — especially in the legs and feet. Sometimes the swelling is so severe that it’s hard for people to fit socks around their ankles. Post a photo online in your socks, tag @NephCure, and use the hashtag #SockItToKidneyDisease.
Rare Disease Day: Letter from the CEO, Josh Tarnoff February 28, 2022 by Lauren Eva Today is February 28th, Rare Disease Day, a global day of recognition of the 7,000 rare diseases that more than 300 million people face worldwide. I wanted to take this day as an opportunity to share with you more about NephCure’s plans for 2022 and how we will continue to change the story of rare kidney disease by elevating and raising awareness of these diseases, supporting patients and families who struggle with them, connecting them to physicians who specialize in their conditions, and after 20 years of research support, bringing about the first wave of disease changing therapies. Our Focus in 2022: In-Person Gatherings Mental Health Support The Possibilities of Genetic Testing Health Equity: Access for All Expert Care from Rare Disease Doctors 2022 is a year full of renewed promise and hope for our families. After suffering through two years of pandemic-induced lockdowns, social distancing, and increased risk mitigation measures, we all yearn for a semblance of normalcy. We are excited to be offering our in-person annual NephCure Patient Summit again this year, with more than 150 registrants coming to gather with us in Orlando. (Attendees can also join virtually.) Throughout the year, we will be out in our Regional Communities, connecting with volunteers, new families, and other stakeholders face-to-face and forging new and deeper relationships with our grassroots NephCure members. Social isolation and the enhanced stress of the pandemic for chronically ill and immunocompromised individuals also continues to bring to the forefront the importance of mental health for our community. May is Mental Health Awareness Month, and we will be sharing programming that underscores a struggle that post-transplant patients face: living with a gift while also dealing with the risks of lifelong immunosuppression or facing recurrence of their original kidney disease in the new organ. We will also shed light on the “invisibility” of kidney disease—with many in patients’ circles not realizing that they are sick or given cause to take the diagnosis seriously. Kidney failure will impact every aspect of your life, as anyone on dialysis will tell you. This year, we are also excited about the promise of what broader awareness and availability of genetic testing opportunities and an increased investment in broad utility and precision medicine treatments will unveil. Patients who haven’t responded well to treatment, patients with kidney disease in their family, especially those of African descent, and patients on the transplant list and their potential donors are all great candidates for genetic testing. And now for the first time ever, there are drugs in development for specific kidney disease mutations and genomic pathways. What does this mean for patients? It means that as research progresses, new treatments will become more effective for you and your individual disease, and that many of them will not just treat your symptoms, but may truly change the course of your disease. We anticipate that, if successful, these new targeted treatments could start to become available as soon as two years from now. Putting new and better treatments into the hands of our patients is what NephCure is here for—it’s a key part of our mission. But what happens when not all community members are represented in trials and research? What will happen once new treatments are finally approved? Now that there is investment in new treatments for rare kidney diseases, we are hyper-focused on ensuring access for all to these clinical trials, new potential treatments, and the expert care our disease community requires. We have spent the past few years forging partnerships in communities of color who are at greater risk for rare kidney disease, and we are eager to share our joint work together more broadly this year, with increased programming, one-to-one patient support, and new government advocacy initiatives that aim to address the root inequities in kidney health and access. Finally—and most importantly if you are a patient or patient caregiver—in case you haven’t caught on, there is a wave of innovation, new research, and new potential treatments happening right now for rare kidney diseases. So, if your doctor isn’t talking to you about trials or new treatments, to be blunt: you need a new doctor! There is too much available right now to ignore the possibilities in trials and other new innovations in care. Reach out to us to get connected to a NephCure Specialist with specific clinical background and research in your rare disease. They will be able to provide you with the most up to date care and clinical trial opportunities. Hope to see you in person (or online!) this year and thank you for being part of this community. Sincerely, Joshua Tarnoff Chief Executive Officer
March is National Kidney Month March 1, 2021 by Lauren Eva In celebration and recognition of National Kidney Month, we’re devoting this period to sharing stories, research news, and educational opportunities specifically for communities of color and other diverse and underrepresented groups who are affected by rare, protein-spilling kidney diseases. Our focus now and always is on keeping kidneys healthy for all the members of our rare disease community. Please read our recent press release on the launch of our Health Equity Initiative, in partnership with HEAL Collaborative. Don’t miss these upcoming events: Thursday, March 4 at 7pm ET: “Rare Kidney Disease Requires Rare Expertise” – In partnership with Black Health Matters and with support from Travere Therapeutics Thursday, March 25 at 7pm ET: “Living Your Best Life with FSGS Kidney Disease” – In partnership with Black Health Matters and with support from Travere Therapeutics Check out some patient stories: Aries Merritt – Overcoming Hurdles Briana’s Journey with FSGS Finding the Beauty in Kidney Disease: Keyaira’s Story Fourth Doctor is the Charm: Kevin’s Journey to the Correct Diagnosis Sabrina’s Journey with Minimal Change Disease Stephanie’s Journey with Nephrotic Syndrome Get up to speed on the latest education, research, and commentary: An Inside Look: Vertex’s Study in APOL1-FSGS APOL1 FSGS Kidney Disease Fact Sheet Ask the Expert: Dr. Rasheed Gbadegesin The Genetic FSGS Discovery Trailblazing Possible Kidney Disease Treatment NephCure U: APOL1 with Dr. Jeffrey Kopp Make sure to visit our Facebook page to see more resources and information, including our “The Doctor is In” social media campaign.
Kidney Health is Equitable Health March 1, 2021 by Lauren Eva March is National Kidney Month. We’re focused on keeping kidneys healthy for all.
COVID-19 Vaccine for Kidney Patients January 13, 2021 by Lauren Eva Answers to your most frequently asked questions on COVID-19 vaccines. With new updates regarding the COVID-19 vaccine coming out regularly, it’s easy to feel overwhelmed by all the information out there. Together with our COVID-19 Medical Advisory Committee, NephCure has put together a list of answers to your most frequently asked questions when it comes to the COVID-19 vaccine and protein-spilling kidney diseases. These COVID-19 Vaccine FAQs are designed specifically with the kidney patient and caregiver in mind. This list of questions and answers is a living document, and we will continue to provide updates to them as more data and information becomes available.
Protein-Spilling Kidney Diseases – A New Educational Primer Article August 14, 2020 by Lauren Eva Podocytopathies in focus Podocytopathies are kidney diseases in which injury to podocytes (key cells of the glomerulus, which is the filter in the kidney) results in proteinuria (loss of protein in the urine) or nephrotic syndrome (a condition characterized by swelling, usually in the extremities, and reduced albumin protein and increased lipids in the blood). This group of diseases is a major contributor to end-stage kidney disease worldwide. A new Primer article in the journal Nature Reviews Disease Primers, authored by a group of leading international experts, has just been published — endorsing the idea that these diseases should be described based on their underlying cause rather than their appearance on biopsy. A Primer article describes worldwide epidemiology, molecular mechanisms, diagnosis and management, and it provides a global and authoritative overview of research on these diseases, as well as of the challenges facing the research community as it strives towards a better understanding of this condition. Visual Summary of Podocytopathies (Protein-Spilling Kidney Diseases) Click on the image above to be taken through to the PrimeView on Podocytopathies. “Patients are often told they have ‘focal segmental glomerulosclerosis’ or ‘diffuse mesangial sclerosis’, but these are not diagnoses per se,” explains the Chief Editor of the journal, Clemens Thoma, DPhil, ORCID. “They are patterns that are revealed when the kidneys are biopsied.” The real challenges lie in understanding what causes these patterns and selecting the most effective and least toxic therapy for each patient, which is the goal of precision medicine. A broad spectrum of causes of podocyte injury can also produce relatively uniform clinical patterns (namely, proteinuria and nephrotic syndrome). “Because of this, these diseases manifest various degrees of proteinuria and risks of progressive kidney scarring,” explains Paola Romagnani, MD, PhD, lead author of the Primer. The Primer explains that distinct contributing factors with different relative contributions can combine to reach a threshold to induce podocyte injury and loss. Such factors include genetic predisposition, low birth weight, prematurity, increased body mass index and exposure to certain viruses and drugs. “Once we define the genetic factors and mechanisms underlying podocyte injury, then targeted personalized management of patients may become a reality,” says senior investigator Jeffrey Kopp, MD, a co-author of the Primer. All too often, current treatments are non-specific in that they address clinical manifestations rather than the underlying causes. “Recent work of ours and other groups suggest that patients with apparently identical ‘diseases’ do not respond similarly to treatments because they have different and unexpected genetic mutations as the underlying cause,” explains Professor Romagnani. “Novel diagnostic approaches involving nephrologists, geneticists and pathologists can identify these causes in more patients.” In the future, targeting specific forms and mechanisms of podocyte injury to promote podocyte repair and resilience may be possible using novel, precision medicine strategies. Professor Romagnani is optimistic for the future. “We hope the Primer will enhance understanding of the podocytopathies and will stimulate new approaches to research and therapeutics.” Read the Primer without access control here. The accompanying Primeview can be accessed here. Nature Reviews Disease Primers (@DiseasePrimers) is a Nature Research journal that was launched in 2015 to provide broad review articles on various health fields. The research described here is conducted in part by the Division of Intramural Research at the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) of the National Institutes of Health. The content in this release is the sole responsibility of the authors and does not necessarily represent the official views or imply endorsement of the National Institutes of Health.
Our commitment to our communities of color. June 10, 2020 by Lauren Eva Enough. We are deeply horrified by the recent violent deaths of George Floyd in Minnesota and Breonna Taylor in Kentucky. They are the latest in a vast chain of Black men, women, and children in the United States whose lives have been tragically and wrongfully cut short. Their lives mattered. We stand in solidarity with those fighting for justice, peace, and equity for Black people and other communities of color in this country. Systemic racism and deeply entrenched inequalities have plagued our country since even before its founding. Our healthcare system continues to deny equitable access to research and care that could significantly improve the lives of Black people and other people of color at all walks of life.1, 2, 3, 4, 5 At NephCure, we are focused on providing support and education to all who are affected by chronic, rare, and progressive protein-spilling kidney diseases, in addition to pushing forward research to better treat and cure these diseases. Black Americans are disproportionately affected by chronic kidney disease, and uniquely affected by an aggressive form of a protein-spilling kidney disease called Focal Segmental Glomerulosclerosis (FSGS).6, 7 Working to improve the options and availability of treatments for Black individuals affected by kidney disease falls squarely within the scope of our organization. NephCure serves ALL people who are affected by protein-spilling kidney diseases, but we know we can do better for our communities of color. We have been working with some collaborators over the past few months on a Health Equity project, focused on increasing diversity in this field, and we’re excited to share more about that soon. But we recognize that this moment is not about us. With that in mind, we are providing space and time throughout this month (and beyond) specifically aimed at highlighting Black voices within our community. There is a great deal of work to be done, and we are dedicated to learning, growing, and constantly improving. If you are so inclined, we welcome your feedback on how we’re doing in this regard. We are not so audacious to expect that we can end the consequences of systemic inequities that have negatively shaped life for Black people in the United States for hundreds of years. But we believe we can make change in our community. And we will. 1 Hamel LM et al., (2016). Barriers to clinical trial enrollment in racial and ethnic minority patients with Cancer. Cancer Control. 2016 Oct; 23(4): 327–337. DOI: 10.1177/107327481602300404 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5131730/ 2US Food and Drug Administration. (2017, February 13). Drug Trials Snapshots Summary Report (2015 and 2016) https://www.fda.gov/drugs/drug-approvals-and-databases/drug-trials-snapshots-summary-report-2015-and-2016 3D. K. Ginther et al., (2011). Race, ethnicity, and NIH research awards. Science. 333, 1015–1019 (2011). DOI: 10.1126/science.1196783 https://science.sciencemag.org/content/333/6045/1015.full 4The Commonwealth Fund. (2008, April 1). Do Primary Care Physicians Treating Minority Patients Report Problems Delivering High-Quality Care? https://www.commonwealthfund.org/publications/journal-article/2008/apr/do-primary-care-physicians-treating-minority-patients-report 5Hayanga, AJ et al., (2009). Residential Segregation and Access to Surgical Care by Minority Populations in US Counties. Journal of the American College of Surgeons, 208(6), 1017-1022. DOI: https://doi.org/10.1016/j.jamcollsurg.2009.01.047 https://www.journalacs.org/article/S1072-7515%2809%2900207-5/abstract 6National Institute of Diabetes and Digestive and Kidney Diseases. Race, Ethnicity, & Kidney Disease. Retrieved June 8, 2020, from https://www.niddk.nih.gov/health-information/kidney-disease/race-ethnicity 7Rosenberg AZ, Kopp JB (2017). Focal segmental glomerulosclerosis. Clin J Am Soc Nephrol 2017;12:502–17.doi:10.2215/CJN.05960616 https://cjasn.asnjournals.org/content/12/3/502
COVID-19 and kidney disease March 30, 2020 by Lauren Eva Your health and safety are our number one priority.
Special update on Coronavirus (COVID-19) for kidney disease patients March 10, 2020 by Lauren Eva NephCure is closely monitoring the situation with the Coronavirus (COVID-19) as it continues to develop worldwide. The World Health Organization (WHO) has declared a Public Health Emergency of International Concern over the global outbreak of the coronavirus, and on January 30th, Health and Human Services Secretary Alex Azar II declared it a Public Health Emergency in the United States. According to the most recent information from the United States Centers for Disease Control and Prevention (CDC), the majority of people who are exposed to the coronavirus will experience mild symptoms, and the likelihood for most people to develop serious illness after exposure is thought to be low. However, older individuals (approximately age 65 and older) and individuals of all ages with underlying health conditions (like kidney disease) or compromised immune systems seem to be at higher risk of developing serious COVID-19 illness. If you are taking medications like prednisone (steroids), cyclophosphamide (Cytoxan), cyclosporine (Neoral), mycophenolate (MMF, Cellcept, Myfortic), prograf (Tacrolimus), rituxan (Rituximab), or any other immunosuppressant drug, your immune system is likely compromised. Prevention is key. We urge you and your immediate family members to take the following precautions now to prevent or delay the spread of the coronavirus and limit your personal risk of exposure to it. Wash your hands frequently. Regularly and thoroughly wash your hands with soap and water for at least 20 seconds, especially after using the restroom, blowing your nose, coughing, or sneezing, or having been in a public place. If soap and water are not available, use a hand sanitizer that contains at least 60% alcohol. Why? The virus can be transferred in bodily fluids, including saliva and stool. Washing your hands with soap and water or using alcohol-based hand sanitizer kills viruses that may be on your hands. Avoid touching your eyes, nose and mouth. Why? Hands touch many surfaces and can pick up viruses. Once contaminated, hands can transfer the virus to your eyes, nose or mouth. From there, the virus can enter your body and can make you sick. Keep space between yourself and others. Maintain at least 3 feet of distance between yourself and anyone who is coughing or sneezing. Why? When someone coughs or sneezes, they spray small liquid droplets from their nose or mouth which may contain virus. If you are too close, you can breathe in the droplets, including the COVID-19 virus if the person coughing has the disease. Practice respiratory hygiene. Make sure you, and the people around you, follow good respiratory hygiene. This means covering your mouth and nose with your bent elbow or tissue when you cough or sneeze. Then dispose of the used tissue immediately. Why? Droplets spread virus. By following good respiratory hygiene, you protect the people around you from viruses such as cold, flu and COVID-19. Clean and disinfect your home. Practice routine cleaning of frequently touched surfaces (for example: tables, doorknobs, light switches, handles, desks, toilets, faucets, sinks & cell phones) using a regular household cleaning spray or wipe. Why? Current evidence suggests that novel coronavirus may remain viable for hours to days on surfaces made from a variety of materials. Cleaning and disinfection is a best practice measure for prevention of COVID-19 and other viral respiratory illnesses in households and community settings. Avoid crowds as much as possible, cruise travel, and any non-essential air travel. Why? Your risk of exposure to respiratory viruses like COVID-19 may increase in crowded, closed-in settings with little air circulation if there are people in the crowd who are sick. During a COVID-19 outbreak in your community, stay home as much as possible to further reduce your risk of being exposed. This information has been collected from the CDC and the WHO and has been reviewed by NephCure’s Board Medical Directors. In addition, you may want to contact your healthcare provider to ask about obtaining extra necessary prescription or over-the-counter medications to have on hand in case there is an outbreak of COVID-19 in your community and you need to stay home for a prolonged period of time. If you have additional questions related to you or your loved one’s health, please contact your primary healthcare provider or nephrologist and follow their guidance. If you would like to be connected to a NephCure Specialist in your kidney disease, please refer to our list of experts here. If there are no specialists in your area, many of these doctors will provide a health consultation via phone. NephCure will continue to monitor world and US-based health guidance, and if new information becomes available that pertains to our rare and chronic kidney disease community, we will provide an updated statement. Additional information can be found directly from the World Health Organization or the Centers for Disease Control and Prevention: https://www.who.int/emergencies/diseases/novel-coronavirus-2019 https://www.cdc.gov/coronavirus/2019-nCoV/summary.html