Rare Life

The artist Bukky Adeyokunnu explains their photography’s relationship to living with sickle cell, in two videos set 9 years apart.

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.

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

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. 

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.

Families impacted by rare conditions may see their own experiences reflected back.

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.

There’s no perfect way to handle people’s reactions to physical differences, but over the years I’ve developed a few techniques.

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.

Empowering rare disease patients and caregiver advocates to be a voice for their communities in the research process at AllStripes.

The #RareSnapshots that drive our work all year round.

Three men from the rare disease community discuss the importance of mental health support.

The same goes for NPC research — we need community participation to move it forward.

A conversation with three AllStripes Ambassadors for the ALD research program.

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

A roundup of thoughtful and energetic takeaways, courtesy of our AllStripes Ambassadors.

This week, we’re exploring just a few of grief’s many forms.

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

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

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

Kevin Dooley founded Cure IBM in 2017 to raise awareness of inclusion body myositis (IBM) and encourage research for an effective treatment and cure.

May is Myositis Awareness Month! Myositis is an umbrella condition consisting of five rare subtypes, including inclusion body myositis (IBM).

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.

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

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

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.

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.

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.