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 Primary Immunodeficiency (PI)...Another group affects both B-cells and T-cells....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
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
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
What Is Familial Chylomicronemia Syndrome (FCS)?...It affects only about 1 to 2 people out of every 1 million worldwide....reactionscomments
Overcoming Infusion Anxiety for People With Primary Immunodeficiency (PI)...This is because your immune system, which is supposed to protect you, does not work as it...reactionscomments
Rare Diseases, Disability, and Self-Identity: I Am More Than My Condition...My condition shapes my life, but it doesn't define my identity. At my core, reactions6comments
Taking Control of Your PI Treatment at Home...A big benefit of SCIg is that you can do it at home....reactionscomments
Demystifying Primary Immunodeficiency Treatment...There are many things you can do to help prevent infections, like: If you do get an...reactionscomments
The Diagnosis Journey: Primary Immunodeficiency (PI)...They tell your body how to grow and work. If there is a mistake in a...reactionscomments
Managing Overstimulation as a Parent...I prepare as much as I can for the next morning before bed: As a...reactionscomments
Building Your Child's DMD Care Team...One of the most important doctors for a child with DMD is a neurologist....reactionscomments
Life as the Primary Caregiver: Insights from a Rare Mom...I am no expert in any of this, but having a positive attitude can change...reactionscomments
Medicaid Needs to Do Better for Rare Patients and Families...I recently took my 3 children to their pediatrician for the last time before our new insurance kicked...reactionscomments
3 Ways I Spend Quality Time With Multiple Kids as a Rare Disease Caregiver...My middle is a high-energy, intelligent boy and my youngest is a sassy little girl...reactionscomments
