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October has been a busy month for our team, with opportunities to share important resources, reflect on recent advocacy efforts, and hear from individuals whose personal experiences remind us why our work matters.
I'm especially pleased to share two stories in this month's edition. Lauren, our Digital Brand Manager, opens up about growing up with Multiple Hereditary Exostoses (MHE) and how her experiences have shaped her connection to our mission. You'll also meet Narah, whose journey with Fabry disease highlights the uncertainty that can come with searching for answers and the importance of having your health concerns heard. I'm grateful to both for sharing their experiences so openly.
With Open Enrollment underway, we're providing several resources to help patients and families make informed decisions about their 2027 health coverage. We're also sharing a look back at our Advocacy for Access Day on Capitol Hill, along with a recent conversation I had with Corey Ford of Nuvera Consulting about healthcare policy changes and what they could mean for patient assistance programs.
You'll also find educational articles covering MPS I, Hereditary Angioedema, and the ways a chronic health condition can affect employment. Each offers information that may be helpful to you or someone you know, and I encourage you to share these resources with others who could benefit from them.
As you explore this month's newsletter, I hope you'll find information that answers a question, offers a new perspective, or helps you feel more prepared for the healthcare decisions ahead. There's always more for us to learn from one another, and I look forward to sharing more of that knowledge and experience in the months ahead.
| | Open Enrollment Is Here: Are You Prepared? | | |
Choosing the right health insurance coverage is an important decision, especially for individuals and families managing rare or chronic health conditions. With the 2026 Open Enrollment season underway, now is the time to review your options, understand potential changes to your coverage, and prepare for the year ahead.
Accessia Health is here to help you make informed decisions with educational resources designed to simplify the process. Whether you're comparing plans, reviewing healthcare costs, or preparing to enroll, we've gathered helpful tools to support you every step of the way.
| | | Your Open Enrollment Resource Guide: | | | | |
Open Enrollment Checklist
Keep track of important considerations, including provider networks, prescription coverage, out-of-pocket expenses, and other factors that may affect your care.
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VIDEO: What You Need To Know
In this session, we explore important considerations for the Open Enrollment period, including how to evaluate health insurance plans, understand potential out-of-pocket costs, and identify coverage requirements that could affect access to medications, specialists, and ongoing treatment.
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Preparing for Open Enrollment
Get a closer look at the essentials of Open Enrollment, from understanding important deadlines and gathering necessary documents to evaluating coverage options that fit your healthcare needs and budget.
| | | Turning Personal Experience Into Patient Advocacy | | |
Living Rare, Living Fully
For Lauren McCabe, Digital Brand Manager at Accessia Health, our mission carries a deeply personal meaning. Diagnosed with Multiple Hereditary Exostoses (MHE), as a child, she understands firsthand what it means to grow up navigating a rare condition. MHE is a rare genetic condition that causes multiple benign bone growths, which can affect movement, comfort, and daily life. Her personal journey gives her a perspective that extends beyond her professional role and brings added meaning to the work she does today.
This month, Lauren is graciously sharing part of that journey with Accessia Health, what living with MHE has taught her, and how those experiences continue to shape her connection to the people and mission we serve.
| | "Once I gained the courage to share and speak on my story, a weight lifted off my shoulders. I suddenly had people in my corner cheering me on, looking past my prominent scarring, and wanting to connect with me. Opening up about myself and my story to others was the best decision I could have ever made." | | “If people truly understood how much effort it takes just to show up, to function, and to smile, they would think twice before questioning what they can’t see.” | |
From Uncertainty to Independence: Narah's Story with Fabry
For much of her life, Narah Cano knew something was happening with her health, even if she did not yet have a name for it. As the years passed, she experienced tingling, numbness, burning pain, and other symptoms that remained unexplained.
Tests repeatedly came back normal, and after having her symptoms dismissed, Narah eventually stopped searching for answers. She adapted to the discomfort and uncertainty until a frightening experience at the gym changed everything—she suddenly could not feel her legs.
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WATCH: Conversations That Drive Change
| | From Capitol Hill to conversations about changing healthcare policies, Accessia Health continues to bring attention to the challenges facing individuals and families living with rare and chronic conditions. | | |
Advocacy for Access 2026
Accessia Health joined patient advocates in Washington, D.C., for Advocacy for Access Day 2026, bringing attention to the healthcare challenges facing individuals and families living with rare and chronic conditions.
From rising healthcare costs to difficulties accessing necessary treatments and services, these experiences highlight the importance of continued collaboration between patients, healthcare professionals, advocates, and policymakers.
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Health Policy & The Impact on Patient Assistance Programs
The policy landscape is significantly shifting in ways that may adversely impact patient access, underscoring the need for patients and patient advocates to have clear view of the impact of the changes. Hosted by Corey Ford, Principal at Nuvera Consulting and Tiara Green, President of Accessia Health, this webinar brings together expert panelists for a practical conversation about current health policy and what it means for patients who may require financial support for their medications.
| | | Stay Informed On The Blog | |
A Closer Look at MPS I: Symptoms, Care, & Available Support
A diagnosis of MPS I can bring many questions for individuals and families. Here are some of the most important things to know about MPS I, from its causes and symptoms to treatment and available support.
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When Your Health Changes Your
Work Life
A chronic illness diagnosis can change more than your care routine. It can affect how you get through a workday, plan for appointments, manage fatigue or pain, and feel secure about your income and health insurance. Understanding your options can help you make decisions one step at a time.
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Hereditary Angioedema (HAE): Symptoms, Diagnosis, & Treatment
Imagine your hand suddenly swelling to twice its normal size, with no bee sting, no allergic reaction, and no obvious cause. HAE is rare, frequently misunderstood, and commonly misdiagnosed, which means many people live for years without answers.
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The people and connections in our lives often inspire us to show up in meaningful ways.
Maybe it’s for a family member, a parent, a friend, someone navigating a similar health journey, or even yourself. As part of our year-end giving campaign, Give Back & Give Hope, we’re inviting you to share who motivates you to be there for others each day. Every story is unique, and we’d love to hear yours! Complete our short survey and help us celebrate the people and personal experiences that inspire us to show up for one another.
| | Explore & Apply for Patient Programs | | |
*Program space is limited and is offered on a first-come, first-served basis. Programs will only remain open as long as funding is available.
If a program is full, you can still apply to add your name to the program waitlist. Once you are on the waitlist, you will be notified if assistance becomes available.
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To apply:
- Click the button below.
- Select 'open' under 'step two'.
- Select the appropriate program and begin the application process.
| | Accessia Health, a national charitable patient assistance organization, is dedicated to eliminating healthcare barriers for people with rare or chronic health conditions. Comprehensive services include personalized case management, financial assistance, education, and legal aid support. Our flexible funding model goes beyond copays, allowing individuals to pay for other essential medical expenses including insurance premiums, screening and diagnostics, therapy services, travel costs and more. Accessia Health works to ensure that every individual has access to the care they need to lead a healthier life. | | | |
Accessia Health exists because of generous donations from our community.
Consider making a gift to provide health and hope to patients nationwide.
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