Sharing the Silver Linings of Living with a Rare Disease

Written By Sara Mazzilli

לינדזי, אדם נדיר, משתפת את "הצדדים החיוביים" שלה. זה לא "מה שלא הורג אותך מחזק אותך", אלא מה שלא הורג אותך מחזק אותך. היא משתפת שמצאה קשרים עמוקים יותר עם אחרים, שיפרה את יכולתה לבקש ולקבל עזרה, ולא פחדה כל כך מהמילה "לא".

Navigating rare disease care can be exceptionally complex. If you are interested in learning more about the latest research opportunities in your rare disease, you can contact the Know Rare Support Team at support@knowrare.com.

Latest from Know Rare

Blog v2
Organization Spotlight: Remember the Girls
Organization Spotlight: Remember the Girls
Nutrition and IgAN (IgA Nephropathy): A Practical, Evidence-Based Guide
Nutrition and IgAN (IgA Nephropathy): A Practical, Evidence-Based Guide
Mariah’s Story: "When The Music Played, She Danced”
Mariah’s Story: "When The Music Played, She Danced”
Organization Spotlight: Danon Foundation
Organization Spotlight: Danon Foundation
The Invisible Job: What Caregiving for a Rare Disease Really Looks Like
The Invisible Job: What Caregiving for a Rare Disease Really Looks Like
Gluten-Free Doesn't Always Mean Healthy: The Uncomfortable Truth Nobody Tells Celiacs
Gluten-Free Doesn't Always Mean Healthy: The Uncomfortable Truth Nobody Tells Celiacs
Research in Antibody-Caused Diseases: Seronegative NMOSD May Be MOG Antibody Disease
Research in Antibody-Caused Diseases: Seronegative NMOSD May Be MOG Antibody Disease
Therapy Near Me
Therapy Near Me
Kidney Week 2025: New Research in Preserving Kidney Function
Kidney Week 2025: New Research in Preserving Kidney Function
Living with Celiac Disease: What They Don't Tell You at Diagnosis
Living with Celiac Disease: What They Don't Tell You at Diagnosis
Danon Disease and Eye Problems
Danon Disease and Eye Problems
My Story: Kaya’s Light and the Call to Awareness
My Story: Kaya’s Light and the Call to Awareness
Organization Spotlight: Kaya Girl Legacy, Inc.
Organization Spotlight: Kaya Girl Legacy, Inc.
I Am Still Here: A Voice from the Rare Side
I Am Still Here: A Voice from the Rare Side
Halloween: Joyful Crip Time 
Halloween: Joyful Crip Time 
What Is Patient-Centered Outcomes Research (PCOR) —and Why It Matters to Rare Families
What Is Patient-Centered Outcomes Research (PCOR) —and Why It Matters to Rare Families
Living with Brugada Syndrome: Michael Grivas’ Story
Living with Brugada Syndrome: Michael Grivas’ Story
Understanding Fatigue in IgAN: Causes and Management
Understanding Fatigue in IgAN: Causes and Management
Accepting Help is Hard
Accepting Help is Hard
Choosing What to Care About When Navigating a Rare Disease
Choosing What to Care About When Navigating a Rare Disease
Sharing the Silver Linings of Living with a Rare Disease
Sharing the Silver Linings of Living with a Rare Disease
Worst Thing to Say to Someone Living with a Rare Disease
Worst Thing to Say to Someone Living with a Rare Disease
Why Rare Disease Patients Fight So Hard for Clinical Trials
Why Rare Disease Patients Fight So Hard for Clinical Trials
Having a Rare Disease is a Full-Time Job
Having a Rare Disease is a Full-Time Job
The Waiting Game in a Rare Disease Clinical Trial
The Waiting Game in a Rare Disease Clinical Trial
The Loneliness of a Clinical Trial
The Loneliness of a Clinical Trial
What I Didn’t Know About The Clinical Trial Selection Process
What I Didn’t Know About The Clinical Trial Selection Process
Getting Treatment and Dealing With Insurance
Getting Treatment and Dealing With Insurance
Caring for the Unseen: Supporting Caregivers of Those with Rare Diseases
Caring for the Unseen: Supporting Caregivers of Those with Rare Diseases
Organization Spotlight: Inspire
Organization Spotlight: Inspire
Sara Mazzilli
Previous

Choosing What to Care About When Navigating a Rare Disease
Next

Worst Thing to Say to Someone Living with a Rare Disease