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July 28.2025
2 Minutes Read

Empowering Lives: How NORD Supports Those Affected by Rare Diseases

Diverse group promoting National Organization for Rare Disorders awareness.

Understanding the Challenges of Rare Diseases

Rare diseases are often labeled as such because they affect a small percentage of the population, yet their impact can be devastating for those diagnosed, as well as their families. The National Organization for Rare Disorders (NORD) has made it their mission to advocate for those with rare diseases, striving to create a supportive environment that fosters research, promotes effective policies, and improves patient care.

A Holistic Approach to Rare Diseases

NORD advances practical change by focusing on education and assistance. Through their Patient Assistance Programs, they help individuals access medications, navigate diagnostic challenges, and provide invaluable support for caregivers. Such programs serve as critical lifelines for families who may feel overwhelmed by their loved ones' conditions.

Connecting Patients with Resources

The NORD Rare Disease Database is an excellent resource for those seeking information about specific conditions. With an enriched understanding of rare diseases, patients can access tailored treatment options and connect with advocacy groups. Such knowledge is empowering, enabling patients and their families to take proactive steps in their healthcare journey.

Driving Research and Innovation

NORD plays an integral role in fostering research initiatives aimed at understanding rare diseases better. The IAMRARE® program invites patients to share their experiences, contributing valuable data that researchers use to identify effective treatments. By participating in studies like the Living Rare Study, patients can influence outcomes directly linked to their conditions and those faced by similar patients globally. This collaborative spirit is essential in pushing for groundbreaking advancements.

Advocacy and Policy Change

Policy advocacy is at the heart of NORD’s mission. By amplifying the voices of those living with rare diseases, NORD ensures that their concerns are heard at government levels. This advocacy drives more effective health policies that can impact access to vital medications and treatments, ultimately altering the landscape of care for rare diseases.

The Emotional Toll of Living with a Rare Disease

The journey through a rare disease is often fraught with emotional challenges. Families may experience fear, isolation, and uncertainty. NORD addresses these needs through community engagement and support efforts, providing shared personal narratives that foster understanding and connection among families facing similar challenges. Such interactions not only create a support system but also offer inspirational stories of resilience that resonate deeply with others in the community.

Conclusion: The Future of Rare Disease Care

The work of NORD demonstrates the power of comprehensive support for individuals living with rare diseases. The proactive measures taken to improve care, enhance research, and drive important policy changes contribute to a brighter future for patients and their families. By staying informed and engaging with NORD’s resources, patients and advocates can play a crucial role in shaping the future of rare disease treatment and care.

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12.20.2025

Understanding the 2025 Transformation in Family Caregiving: Progress and Challenges

Update 2025: A Year of Transformation for Family Caregivers As we reflect on 2025, it is clear that the landscape for family caregivers has undergone significant change and development. Jason Resendez's recent insights highlight the challenges faced, particularly in a policy environment hostile to family caregivers. Despite these hurdles, we witnessed transformative advancements, illustrating resilience and determination in advocating for family caregivers across the nation. Key Achievements for Caregivers in 2025 One of the most notable achievements was the successful push against substantial Medicaid cuts, ensuring protections for family caregivers remained intact. This was no small feat in the current landscape, and it reflects a growing recognition of the invaluable role caregivers play in the healthcare system. Equally important was the advancement of Medicare’s acknowledgment of caregivers as essential partners in care—a pivotal shift that underscores caregivers' critical role in the continuum of care. In another milestone, Resendez reported the release of comprehensive caregiver data revealing nearly 63 million Americans providing family care—an increase of almost 50% since 2015. This statistic is more than just a number; it's a powerful narrative of transformation that is beginning to reshape national discussions on caregiving, moving it from the margins to a central focus in policy conversations. Senate Testimony and Growing Visibility This year also saw Resendez testify before the Senate Aging Committee, emphasizing the need for increased investment in family caregivers. His insights resonate with a broader trend where caregivers are finally being acknowledged in critical arenas, marking a new era of advocacy for this often-overlooked segment of the American public. This change brings hope, as Senators like Andy Kim raise their voices in solidarity, sharing personal stories that highlight the weight and exhaustion felt by those in the “sandwich generation,” where individuals balance the demands of both their careers and caregiving responsibilities. Understanding the Impact of Caregiving The recently released AARP-National Alliance for Caregiving report indicates profound ramifications stemming from caregiving roles. Over 40% of caregivers now provide high-intensity care, often undertaking complex medical tasks without adequate support or training. Financial burdens are also significant, with one in five caregivers facing negative impacts on their health and wealth due to their caregiving responsibilities. The report shows that many caregivers are employed yet struggle to balance their work with caregiving duties, often lacking necessary workplace protections. Future Predictions: Where We Go from Here What does the future hold for family caregivers? As we move into 2026, the prospects look promising. There’s a growing movement to implement a National Strategy to Support Family Caregivers, which encompasses comprehensive measures for financial support, workplace protections, and access to essential services. This strategy, developed from extensive public input, aims to provide a robust framework for supporting caregivers across various demographics and needs. Creating a Culture of Care The shift in attitudes toward caregiving also points to the necessity of fostering a culture that values and supports care. As Resendez and others have championed, recognizing caregivers' contributions is essential in shaping a more compassionate society. The testimonials and commitments shared during pivotal events like the Caregiver Nation Summit exemplify the collective will to create systemic changes that prioritize caregivers. Conclusion: Celebrating the Resilience of Caregivers In summary, while 2025 presented its challenges, it also illuminated the remarkable efforts and successes achieved by family caregivers. Together, we are part of a movement that seeks not just recognition but systemic support for those providing care. As we look forward to 2026 and beyond, the call to action remains: ensure that caregiving is valued, supported, and integrated into our national health conversation. Every family caregiver deserves this commitment from society. Join us in advocating for change, making space for care, and building a future where family caregivers are recognized as the heart of the movement.

12.19.2025

How Senator Andy Kim's Caregiving Experience Shapes National Policy

Update Gratitude as a Foundation for Change in Caregiving Policy At the recent Caregiver Nation Summit, gratitude emerged as a powerful theme. Attendees expressed appreciation for the caregivers who tirelessly support loved ones and for the leaders willing to share their caregiving stories to inspire policy change. Among these leaders is Senator Andy Kim of New Jersey, whose personal caregiving journey profoundly illustrates how individual experiences can shape national caregiving policies. Senator Kim's Story: An Example of Personal Dedication Senator Kim's caregiving experiences began as a campaign highlighted by personal challenges. He faced the daunting task of caring for his father, who was recently diagnosed with Alzheimer's, while balancing professional obligations and family life. "There are times when I feel trapped," he candidly admitted, a sentiment that resonates with millions of caregivers across the nation. Kim's pivotal moment came on the Senate floor, when he proclaimed, "I’m a caregiver" for the first time publicly, marking a significant turn in his journey as a policymaker. He emphasized the importance of storytelling in revealing the realities caregivers face and how these narratives can galvanize necessary action. A Broader Perspective: The State of Caregiving in America Research from the National Alliance for Caregiving (NAC) highlights a staggering reality: more than 63 million Americans are involved in caregiving activities, often without the training or support they need. If childcare is included, that number swells to 130 million. This staggering data underscores a critical issue—while families are engaged in caregiving collectively, the support systems remain disjointed, leaving many feeling exhausted and isolated. The Role of Storytelling in Advocacy Senator Kim’s commitment to using his story as a tool for advocacy reveals a fundamental truth about caregiving: behind every statistic lies a personal narrative. The emotional toll on caregivers, from physical strain to financial burden, is often overlooked. By sharing their experiences, advocates can raise awareness and inspire action toward comprehensive reforms in caregiving policy. This approach is echoed in Kim's maiden speech, where he linked his father's experiences with a broader national struggle for care and compassion. Connecting Care Across Divides Kim states that caregiving serves as a “horizontal thread” linking diverse populations. As he puts it, caregiving transcends political, generational, and cultural divides, creating a shared responsibility among all citizens. In his speech, he reiterated, “No bigger responsibility exists than the one we have to the people we love.” This call to action serves as a reminder that the fight for policy change and a more supportive system is not merely a political issue but a deeply human one. Future Directions for Caregiving Legislation As Kim looks forward, he envisions a Senate that actively works toward more robust caregiving policies, addressing the complexities and barriers caregivers face. He proposed that the Senate should not only react to crises but set forth ambitious goals that reflect the needs of caregivers and their families. Kim's vision includes universal healthcare, support for child and long-term care, and policies that elevate caregivers' voices, ensuring they are seen and heard in the national dialogue. Conclusion: The Call for Action The dedication demonstrated by Senator Andy Kim resonates with caregivers and advocates across America. The intersection of personal experience and public service can drive meaningful change in caregiving policies. As we reflect on his poignant message, it’s crucial to recognize the collective responsibility we hold in supporting caregivers. Engage in advocacy efforts, share your stories, and ensure that caregivers receive the support they deserve. Together, we can cultivate a compassionate and supportive environment for all caregivers in America.

12.04.2025

Understanding Key Updates for Family Caregivers in the 2026 Medicare Fee Schedule

Update Understanding the Importance of Caregiver Support in the Medicare Landscape The recent updates from the Centers for Medicare & Medicaid Services (CMS) regarding the CY 2026 Medicare Physician Fee Schedule represent a critical moment in recognizing the role of family caregivers as essential partners in the healthcare system. With over 53 million Americans currently providing unpaid care to aging relatives, enhancing support for these caregivers can significantly impact both their well-being and the quality of care available to recipients. Key Changes in the 2026 Medicare Fee Schedule Among the recognized changes in this year's Medicare updates are several provisions aimed at expanding access to caregiver training and behavioral health services: Telehealth for Caregiver Training Services: Permanent approval for telehealth services allows caregivers, particularly in rural areas, to access essential training that can enhance caregiving effectiveness. Improved Access to Behavioral Health Services: The incorporation of community health integration services addresses the mental health challenges many caregivers face, providing them with vital support. Future Payments for Evidence-Based Caregiver Programs: Signals from CMS suggest that funding may evolve to support innovative programs that directly benefit caregivers and integrate community partnerships. What Does “Upstream Drivers” of Health Really Mean? A noteworthy terminology shift from “social determinants of health” to “upstream drivers” represents a more profound awareness of the root cause of health issues. This change reflects the understanding that non-medical factors like socioeconomic status, education, and environment majorly influence the outcomes of caregiving. The new language emphasizes the importance of recognizing these factors within the medical care framework, potentially broadening the scope of support for family caregivers. Ongoing Advocacy Needs for Caregiver Support While this initiative marks progress, there remain advocacy opportunities that organizations like the National Alliance for Caregiving (NAC) and various coalitions are pursuing. Key areas still requiring development include: Clearer billing guidance for Caregiver Training Services to prevent confusion and ensure proper reimbursement. Alignment of reimbursement rates to reflect the actual costs caregivers incur, which often go unaccounted for. Investment in provider education to ensure that healthcare professionals understand and can adequately support family caregivers. The Broader Context of Caregiver Struggles This development comes amidst persistent difficulties faced by family caregivers as revealed in numerous studies. Reports indicate that not only do caregivers often have to navigate complex Medicare rules, but they also experience significant emotional and physical strain despite the love and intent behind their efforts. As Linda Chen's situation exemplifies, caregivers frequently find themselves exhausted from endless paperwork and insurance hurdles, exacerbating their stress and the toll on their mental health. Future Challenges and Obligations This shift in Medicare policy is encouraging, yet systemic issues remain unaddressed. As the population ages and the number of caregivers continues to swell, there is an urgent need for a healthcare framework that meaningfully supports caregivers in their critical roles. Actionable Insights for Caregivers Caregivers can take proactive steps to manage both their responsibilities and the comprehensive care of their loved ones: Stay informed about Medicare updates and how they affect care plans. Connect with regional health agencies for resources and support services. Consider mental health support for themselves as well, as caregiver burnout is a genuine risk. As we move forward, continued advocacy for a robust support framework for family caregivers is crucial. Recognizing caregivers not merely as auxiliary support, but as pivotal players in the healthcare system could lead to significant reforms that benefit everyone involved. The journey toward more substantial caregiver support is ongoing, and every step taken is integral in shaping a healthier future for caregivers and their loved ones.

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