Sarcoma & Bone Cancer Awareness Month
July Is Sarcoma & Bone Cancer Awareness Month! Heard of sarcoma? Most people haven’t—and that’s exactly why we’re talking about it. At Clinakos Inc., we’re on a mission to bring rare cancers out of the shadows and into the spotlight. What’s a Sarcoma, Anyway? Imagine a cancer that can hide in your bones, muscles, or […]
Rare Should Not Mean Invisible
Rare diseases are costing us more than we think. 30 million Americans live with a rare disease. ⏳ It takes an average of 6 years and 17 medical encounters for diagnosis. And the cost? Over $1 trillion annually in the U.S. alone—just from 379 out of 10,000+ rare diseases. Here’s what’s even harder to process: […]
Graves’ Disease Awareness Month
Spotlight on Kade’s Courage This July, Clinakos Inc. is proud to honor Graves’ Disease Awareness Month by sharing Kade’s inspiring journey—a reminder that every child’s health story matters and that early action can change lives. Kade’s Story: Turning Uncertainty into Answers At just 4½, Kade’s endless energy and love for play were suddenly shadowed by […]
National Institutes of Health (NIH) announced a new funding opportunity for the Rare Diseases Clinical Research Consortia (RDCRC)
In May 2025, the National Institutes of Health (NIH) announced a new funding opportunity for the Rare Diseases Clinical Research Consortia (RDCRC), emphasizing collaborative, multi-site, and patient-centric non-interventional research. Read the news link below This initiative is a major step forward in rare disease research, focusing on: Collaboration across institutions and disciplines Multi-site studies to […]
Cancer Immunotherapy Month
June is Cancer immunotherapy month, and Clinakos Inc. nothing excites us more than getting to know about new breakthrough therapies and innovations in Oncology and Precision Medicine! ✨ In a recent study (April 2025), researchers have unveiled EchoBack-CAR T-cells—next-gen, ultrasound-controlled immune cells with game-changing benefits: 5x longer attack on tumor cells vs. standard CAR T-cells […]
Myasthenia Gravis Awareness Month
June is Myasthenia Gravis Awareness Month! Did you know that patients with seronegative myasthenia gravis (snMG) face unique and often greater challenges than those with other forms of MG? An April 2025 research study shows: • snMG patients experience longer diagnostic delays and earlier symptom onset • Only 15.9% achieve complete remission (compared to 27.8% […]
RWE’s Growing Role in Rare Disease Innovation
Spotlight on Progress: We’re thrilled to see how real-world evidence (RWE) is transforming the landscape of drug and biologic approvals in rare diseases. According to a recent article from the American Society for Clinical Pharmacology & Therapeutics (ASCPT), between fiscal years 2020 and 2022, the US FDA approved five drugs and biologics where RWE played […]
Alzheimer’s & Brain Awareness Month
Alzheimer’s & Brain Awareness Month: Jeff’s Story—Redefining What’s Possible At Clinakos Inc., we know that behind every diagnosis is a person with dreams, grit, and a story worth telling. This Alzheimer’s & Brain Awareness Month, we’re honoring those stories—starting with Jeff Borghoff’s. When Life Hits Pause—And Play Imagine being a tech-savvy dad in your early […]
Noteworthy update for the world of rare disease innovation
Noteworthy update for the world of rare disease innovation! The FDA’s head of CBER, Vinay Prasad, stated at the recent National Organization for Rare Disorders conference that the agency is committed to making rare disease drugs available at the very first sign of promise. Here’s what you need to know: Faster Access: The FDA is […]
Batten Disease Awareness Day
Batten Disease Awareness Day: Shining a Light, Sharing a Story June 9 is not just another date on the calendar—it’s International Batten Disease Awareness Day, a day when families, advocates, and organizations around the globe unite to shine a light on one of the world’s rarest and most devastating childhood diseases. At Clinakos Inc., we […]
