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.
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.
‘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.
7 Books Featuring Kids with Rare Diseases
Families impacted by rare conditions may see their own experiences reflected back.
‘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.
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.
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.
AllStripes’ Ambassador Program
Empowering rare disease patients and caregiver advocates to be a voice for their communities in the research process at AllStripes.
When Every Day Is Rare Disease Day
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.
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.
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
A roundup of thoughtful and energetic takeaways, courtesy of our AllStripes Ambassadors.
3 Links: Representation, the Time Tax and Support
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
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.
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).
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.