Where's Your Line? Navigating Repeated IV Attempts with a Rare Disease...I am so aligned with this mindset that I am left completely baffled when told by...reactions4comments
Rare Sibling Advocacy: 7 Ways to Make an Impact...As my fraternal twin daughters turned 16, I observed a remarkable evolution unfolding within them, especially reactionscomments
Treatment for ANCA-Associated Vasculitis...That is why most people keep taking maintenance medicines for at least 12 to 24 months reactionscomments
Understanding Primary Immunodeficiency (PI)...Another group affects both B-cells and T-cells....reactionscomments
Diagnosing ANCA-Associated Vasculitis...A biopsy is often needed to confirm the diagnosis. In a biopsy, a doctor removes reactionscomments
Beyond the Needle: Overcoming HAE “Infusion Fatigue”...However, the work to stay healthy can be hard. This work is often called treatment burden. And it...reactionscomments
Mastering the Infusion: A Guide to Self-Administration and Port Care...A port is a small device placed under the skin of your chest. It is connected...reactionscomments
The Future of HAE Care: Understanding Gene Editing...It is given as a single liquid dose into a vein. This is called an...reactionscomments
Tracking Your Symptoms: How CIDP Progresses and What to Expect...A key feature of CIDP is that it builds up slowly. By definition, the symptoms develop...reactionscomments
Understanding Hereditary Angioedema (HAE)...You may have been told your swelling is just a bad allergy. HAE is a rare genetic...reactionscomments
Caring for a Child With a Rare Disease: The Difficult Decision to Return to Work Outside the Home...Though I am no expert, I highly suggest that you draw out scenarios A, B, and...reactionscomments
Your Guide to the CIDP Diagnosis Journey...CIDP is rare, and it is easy to confuse it with other conditions....reactionscomments
What Is ANCA-Associated Vasculitis?...Early signs are easy to mistake for other illnesses, so it helps to know what to watch...reactionscomments
Understanding Chronic Inflammatory Demyelinating Polyradiculoneuropathy (CIDP): The Basics...It is normal to feel worried or overwhelmed....reactionscomments
The Ethical Necessity of Truthfulness in Health Advocacy...Whether you belong to a rare disease community or not, reflecting on your role as an...reactionscomments
Finding Resilience and Purpose After a Rare Disease Diagnosis...As I reflect on my current state, I ask myself questions that guide my path. reactionscomments
The Diagnostic Maze: Why Was I Misdiagnosed?...This can help them see a pattern of recurring attacks. It is important to know how reactionscomments
NOW CLOSED: Finding Comfort in Rare: Awareness Month Giveaway...The giveaway ends on Friday, February 27, 2026 at 12:00 PM ET. The winner will...reactions1comment
Signs and Symptoms of hATTR-PN...To understand why hATTR-PN causes so many different symptoms, it helps to look at how reactionscomments
How is hATTR-PN Diagnosed?...The final step is genetic testing. This test is a simple blood or saliva sample. It looks...reactionscomments
