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
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
Understanding Hereditary Transthyretin Amyloid Polyneuropathy (hATTR-PN)...ATTR-PN is a complex condition, but you do not have to face it without help....reactionscomments
HAE and the Estrogen Connection: A Guide to Hormonal Triggers...If you plan to have a baby, talk to an HAE specialist. You need a clear...reactionscomments
Crafting Hope: How Art Helps Me Navigate Rare Disease...What I love most about art is that it is a bridge, enabling me to...reactions6comments
Understanding and Managing the Non-Pancreatitis Symptoms of Familial Chylomicronemia Syndrome...The main theory is linked directly to the high level of fats in the blood. FCS is...reactionscomments
My Experience With New Jersey's Personal Preference Program...As I mentioned before, getting all of this set up is a bit of...reactionscomments
20 Essential Self-care Practices for Rare Disease Caregivers: My Journey to Resilience...I spill my heart on pages in my journal to look objectively at my...reactionscomments
3 Things I Learned About Doctors After My Son's Rare Diagnosis...It is a lot of work, but as a patient or family member, advocating...reactionscomments
