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Rare Life

Blog posts

Large family standing front of a front door.

This Holiday Season, Talk About Your Family Health History

by Leticia Silva
November 24th, 2022 is National Family Health History Day (also known as National Family History Day) — a day to raise awareness of familial health.
Chandler smiling and looking directly into the camera

Feeling More Me

by Chandler Crews
To me, having achondroplasia isn’t what makes me beautiful. It’s one part of my life.
A young Maria painting on a canvas

Bringing a Creative Approach to My Access Tools

by Maria McClellan
Being born with a disability that has evolved or progressed in my lifetime, I’ve had to adapt to every moment.
Parent and child holding hands

5 Mental Health Resources to Help Rare Patients & Families Feel Less Alone

AllStripes
Mental health is becoming a greater part of the conversation among the rare disease community and its supporters.
Photo shows Bukky with their hands on their chin and cheeks, wearing a pink flower crown.

Photos Not Taken: A Video Series on Living With Sickle Cell Disease

The artist Bukky Adeyokunnu explains their photography’s relationship to living with sickle cell, in two videos set 9 years apart.
Stephen with his wife and business partner Michele

When a Rare Disease Threatens Your Livelihood — and Your Life

By Stephen V. Smith
Little did I know that my inability to swallow was the beginning of a myasthenic crisis that would threaten my life, realign our world and keep me hospitalized for nearly seven weeks.
Popcorn and a director's slate on a yellow background.

7 Movies and TV Shows Featuring Characters With a Rare Disease

Hollywood hasn’t always made an effort to depict rare disease on screen, and when it has, the results have been mixed.
Ken wears glasses and a beanie looks straight at the camera.

‘Hi, I’m Ken With AMN’

Listen to our audio conversation with a YouTuber impacted by ALD, or adrenoleukodystrophy.

An Inside Look Into the Lives of 2 Sickle Cell Advocates

By Wunmi Bakare
Wunmi Bakare and Teonna Woolford are two Black women with unique approaches to sickle cell advocacy. Wunmi focuses on erasing the stigma of sickle cell disease through proactive engagement with the media, and Teonna fights to end the disparities in sickle cell reproductive health. 

How I Stopped Being Embarrassed and Started Deepening My Friendships

By Arianna Faro
Because I have Klippel-Trenaunay syndrome, maintaining a social life can be hard. But I’ve learned that concealing parts of myself is even harder.
Many colorful books sit on a white bookshelf

7 Books Featuring Kids with Rare Diseases

Families impacted by rare conditions may see their own experiences reflected back.
Two young men are sitting on top of a car, facing away from the camera, silhouetted in the sunset

‘I Think You Should Get Upset About Big Things’

By Jonathan and Calum
Two brothers reflect on being diagnosed with Fabry disease at 15 and 19, entering adult care at young ages and the urgent need for mental health support.
Mandy sits in a wheelchair in a hospital room. She's smiling and appears cheerful.

When People Point and Stare

by Mandy Sellars
There’s no perfect way to handle people’s reactions to physical differences, but over the years I’ve developed a few techniques.
A sign on the side of a brick building reads "How are you, really?"

What Fabry Disease Taught My Family About Mental Health

By Loretta MacInnes
The issues with support for young people and for anyone with a rare disease are clear. When help is needed it is usually needed immediately.
Maria, an AllStripes Ambassador, appears in a circular photo on the left. Text to the right reads, "By joining AllStripes, we're empowering ourselves, our stories and our knowledge for both Morquio A & B."

AllStripes’ Ambassador Program

By AllStripes
Empowering rare disease patients and caregiver advocates to be a voice for their communities in the research process at AllStripes.
A collage of people from the rare disease community.

When Every Day Is Rare Disease Day

By AllStripes
The #RareSnapshots that drive our work all year round.

‘It’s Okay to Talk About It’

As-told-to José Vadi
Three men from the rare disease community discuss the importance of mental health support.
Three of Cindy's children are pictured sitting next to each other when they were young, smiling and goofing around.

I Learned I Couldn’t Do This Alone

By Cindy Parseghian, as-told-to AllStripes
The same goes for NPC research — we need community participation to move it forward.
Three photos, one of each participant, appear side-by-side: Jon wears glasses and a blazer; Ken wears a beanie, glasses & smile; Olivia has a green shirt on and a smile.

3 Lives, 3 Different ALD Experiences

as-told-to Taylor Kane
A conversation with three AllStripes Ambassadors for the ALD research program.

What Does ‘Care Team’ Mean to You?

By Taylor Kane
Four members of the rare disease community describe their experiences with coordinated health care.

8 Highlights From the Global Genes RARE Patient Advocacy Summit

By AllStripes
A roundup of thoughtful and energetic takeaways, courtesy of our AllStripes Ambassadors.
A person grimaces in pain and puts their hand to their forehead.

The Many Forms of Grief

By AllStripes
This week, we’re exploring just a few of grief’s many forms.
A green alarm clock with a white background.

3 Links: Representation, the Time Tax and Support

By AllStripes
This week, Finding Dory and disability representation, how the time tax relates to rare disease and profound insight on giving and receiving support.

3 Links: Disability Pride Month

By AllStripes
Content about disabilities, curated with the rare disease community in mind.

I Freaking Love Selfies

By Melissa Blake
To me, they mean self-confidence, loving my disabled body fully and unapologetically taking up space.

Cure IBM: Growing Research and Awareness for the Common Muscle Disease

By Taylor Kane
Kevin Dooley founded Cure IBM in 2017 to raise awareness of inclusion body myositis (IBM) and encourage research for an effective treatment and cure.
Rhonda, dressed in blue as The Myositis Warrior, a superhero.

4 Ways People With Inclusion Body Myositis Can Contribute to Research

By Taylor Kane
May is Myositis Awareness Month! Myositis is an umbrella condition consisting of five rare subtypes, including inclusion body myositis (IBM).
Hands type on a laptop, a stethoscope lying on the table next to them.

Tips for Preparing for a Doctor’s Appointment When You Have a Rare Condition

By Taylor Kane
When you're impacted by a rare disease, preparing for a doctor's appointment can be a process. Five AllStripes ambassadors shared their top tips.

13 ‘Rare Disease Truths’ That Will Make You Think

Throughout the month of February, members of the rare disease community have been sharing what it’s really like using the hashtag #RareDiseaseTruth.

A PSP Wish List: Common Items People Impacted by PSP Might Need

By Angela Jocson
Gradually, PSP patients can have trouble completing everyday activities. Here’s a compiled list of items that PSP community members have shared.

Raising Awareness for Rare: One Day at a Time

By Stephanie Fischer
Awareness days, weeks or even months are opportunities to rally a community and raise funding to advance the mission of nonprofit organizations that serve individuals living with a rare disease and their families.

How the Rare Disease Community Is Adapting to COVID-19 Restrictions

By Catherine Cooke
People impacted by rare conditions already know what it’s like to make big adjustments for health reasons. Here's how three members of the rare disease community are using their unique perspectives to meet the challenges of COVID-19.

9 Ways to Stay Connected to Seniors and Immunocompromised Friends During COVID-19 Social Distancing

By Catherine Cooke
Human connection is critical to all our mental health during this time. Here are a few creative ways to remind your friends and family you care.
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