After our daughter was diagnosed with Kabuki syndrome, we were given outdated educational material. I don’t want that to happen to anyone else.

The #RareSnapshots that drive our work all year round.

After my daughter was diagnosed with MELAS and Leigh syndrome, our family decided to embrace doing fun activities and taking pictures to remember it all.

It’s perhaps my greatest honor that while I lost Graham physically, I carry him every day to work with me.

Danielle and Michelle of Love Never Sinks discuss how information gathered from the previous generation of children with Lesch-Nyhan syndrome is helping families today.

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

Getting diagnosed with Fabry disease was a relief in some ways — to know that there was actually something wrong.

I hope my debut TV appearance will raise awareness, encourage research and remind everyone that people with Kabuki syndrome should follow their dreams.

Seeking care for a rare condition, which often means having few options to begin with, can make this even more challenging.

Data completeness is essential to real-world data (RWD) quality. In this infographic, we will explore how data completeness is defined and improved.

Families who have felt the devastation of MLD want to help, and participating in research is one way to do that.

Hear the story of a real PicnicHealth user, Maegan, and her experiences as she has recently received a diagnosis of paroxysmal nocturnal hemoglobinuria and is now living with a rare disease and constructing a new normal.

Hear from a real PicnicHealth user, Maegan, and her experiences living with paroxysmal nocturnal hemoglobinuria as she continues her journey and finds peace with her diagnosis and raises awareness for the rare disease community.

Years of systemic racism have prohibited or limited the ability of many Black individuals from obtaining a medical education. For Black patients and families impacted by rare disease, seeking health care professionals who are also Black can be uniquely challenging.

My experience with Leigh syndrome has opened my eyes to how many people are impacted by rare disease — and what we can do about it.

People I meet ask me what I do and I say, “I write children’s books for kids with sickle cell disease.”

2021 was another exciting year at PicnicHealth. We’re looking back and celebrating all that we accomplished with our patient volunteers and life science partners. Take a look with us. And thank you for coming along on our journey.

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

This year, the theme focuses on Black Health and Wellness — an especially timely focus.

I’ve realized how much families like mine can help families currently dealing with the everyday challenges of NPC.

As the founder of Myositis Support and Understanding Association (MSU), I’ve seen and experienced how far-ranging the impact of living with a rare disease like dermatomyositis can be.

Because of what I’ve been through as a rare patient, I’m driven to help people facing similar challenges.

Having dermatomyositis is life-changing, and you never know what your new normal is going to be.

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

After my son Lincoln was diagnosed, I started connecting with others all over the world about their PROS journeys.