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Rare Disease Day: Letter from the CEO, Josh Tarnoff

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
  • Apoyo a la salud mental
  • 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.

Atentamente,

Joshua Tarnoff
Director ejecutivo

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