Living with Chronic Illness. Finding Your Inner Strength.
Living with a chronic long-term health condition, can have a devastating effect on someone’s life as it affects everything we do. It’s like finding yourself on a new path without…
How I Turned Huntington’s into My Life’s Passion for Change
My name is Antonio Maltese and I am a 22 year old senior Political Science major concentrating in International Relations and minoring in German at Virginia Commonwealth University. Back in…
Don’t Miss this Q&A about the Upcoming NORD Patient and Family Forum
Q&A with NORD Director of Membership, Debbie Drell, on the Living Rare, Living Stronger Patient and Family Forum, June 21-23 in Houston, Texas Which health care professionals would most benefit…
Living with Blepharospasm, Coping with Social Phobia
I was diagnosed with benign essential blepharospasm at the end of 2015. This is a neurological condition which causes the muscles around my eyes to contract, resulting in uncontrollable blinking…
Rare Inspiration: A Myasthenia Gravis Patient Story
As I listened to her story I kept thinking, “You can’t make this stuff up.” Or at least no one would want to anyway. The first time I met Adeola…
Opinion: Adults are 50% of Rare Disease Patients— Let’s Start Acting Like It
We need to talk about adult rare disease patients. Adults who have a rare disease diagnosis are faced with a blaring issue-- I'm speaking for a large number of adults here,…
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A Rare Story Following HPS Awareness Day
You will never forget the day you are told your child has a one in a million rare disorder: the overwhelming fear of isolation, fear of what the future holds…
Learn about The Dupuytren Research Group
The Dupuytren Research Group was founded ten years ago. Our original name was Dupuytren Foundation. Our original mission was simple: to advocate for Dupuytren patients. Providing patient education, physician education, connecting patients with patients,…
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Huntington’s Disease: Choosing to Make a Difference
My name is Casey. I’m 27 years old and have a 50% chance of becoming symptomatic for a neurodegenerative disease in my 30’s (if my onset aligns with that of…
No Gene for the Human Spirit
“There Is No Gene for the Human Spirit”—from the movie Gattaca, 1997 Whether it’s distant uncles purported to be horse thieves in the early days of the…
Women with Dupuytren Disease
A traditional Dupuytren narrative is that Dupuytren is primarily a painless nuisance problem of bent fingers in old men. This perception does a disservice to many. Not only is Dupuytren common…
My Battle, My Victory: an HAE Story
Loukisha shares her journey with hereditary angioedma (HAE). Living with a rare disease you'll experience highs and lows. Unfortunately the moments of struggle are unavoidable; all you can do is…
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Pliant Announces Phase 1 Clinical Study Evaluating Anti-Fibrotic Agent PLN-74809
Pliant Therapeutics, Inc., a biotechnology company specializing in developing and commercializing treatments for fibrotic diseases, announced on January 3, 2019 through PRNewswire, that it has initiated a Phase 1 first-in-human…
A Christmas Prayer: Words from a Chronic Illness Patient
What if this Christmas season, God would appear to me and say, “Ask what I shall give thee,” as He did in a dream to King Solomon many years ago.…
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PKU and Living Medicines: Spotlight Synlogic
Press releases earlier this year on biotech company, Synlogic, announced quite favorable results on both pre-clinical and clinical data on a unique application of synthetic biology for the rare disease, phenylketonuria (PKU). In just…
Meet Julie: A CIDP Warrior
My name is Julie Bell. I am someone living with CIDP, Believe or not, it’s changed my life. And today, I consider myself blessed—even despite having a rare and equally…
Desiring Independence When You Have a Rare Disease
While most of us have trouble accepting our limitations, it can be especially hard for people whose limitations are due to a rare disease. In meeting with and corresponding with…
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Thanksliving
We are entering the Thanksgiving season. I’ve been taught all my life that it shouldn’t be only a season, but an attitude year around. But how? By telling Mom thank…
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Morgan Share her POTS Story: Part Two
This is part two of Morgan's story. Read the first half here. I was taken off of work and school for three months to monitor my condition. I had to drop…
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Morgan Share her POTS Story: Part One
This is part one of Morgan's journey with POTS. Check out the second half of her story here. Like most stories, mine begins with someone else’s. I was in sixth…
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I’m Not Sicker Than Someone Who Can’t Get an EDS Diagnosis
While I write about rare and neglected disorders all the time, very few people in my life actually know about my own experience. I have hypermobile Ehlers-Danlos syndrome (EDS), a…
Jasmine’s Dysautonomia Story: Turquoise is my Favorite Color!
My name is Jasmine Taylor and I am 12 years old. October is one of my favorite months (July is the other one- it’s my birthday month!)… Let me tell…
Amber Shares Her POTS Journey: Part 2
This is the second part of Amber's story. Check out part one here. June rolled around, and my appointment with the rheumatologist came up. The hour-long car ride there made…
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Amber Shares her POTS Journey: Part One
Hello all! My name is Amber Aerni. I am 28 years old, and I would like to tell you the story of my POTS journey. Yes, I refer to my…
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All Things Levi: A Rare CMTX4 Patient Story
All things Levi. Such a generally fun-loving little boy, yet such a complex bundle of medical conflagrations. All blended and tied up in a robust package that makes Levi a…
