Read the results of our COVID-19 healthcare impact survey.

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

With that, I’m very happy to share that PicnicHealth has raised a $60m Series C to build the deep, complete, and clinically-rich real-world data sets needed in 30 new diseases. As always, we’ll do this by partnering directly with patients to give them control over their own data.

‍Caregiving for a loved one with Alzheimer’s is a difficult journey that millions of individuals in the United States are forced to tackle. Part of that caregiver journey usually includes managing your loved one’s medical care, including their medical history, prescriptions, and more. Having access to your loved one’s medical records is critical in being able to advocate for your loved one and manage their care. ‍Jennifer Fink, who is caring for her mother with Alzheimer’s, shares her struggles with accessing medical records and how having them would have made a difference in her mother’s care.

Reading through my dad’s ALD-related medical records helped me paint a much clearer picture of what my family went through all those years ago.

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.

James and Andrea discuss living with a PIK3CA-related overgrowth spectrum diagnosis and isolation, the power of contributing medical records to research — and what adults can learn from kids’ reactions to physical differences.

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.

I can’t imagine how parents without medical training take care of children with ALD.

“Instill confidence in him by letting him know he can do and be whatever he wants no matter what.”

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

For me, undergoing a controversial treatment like limb-lengthening was another opportunity to use my voice.

PicnicHealth will present the “The Empowered Patient: Driving individual and population health with data & technology” at ISPOR 2022

I’m traveling new paths, navigating the intersections of my past and present selves.

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.

When you are born with a rare medical condition, you are faced with endless appointments with various doctors trying to help with the physical nature of your condition. However, I’ve found that doctors rarely seem to mention the psychological effect of what living with a rare condition can bring — especially if your condition makes you look visually different from the average person.

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.

Sadie hasn't really regressed as much as most kids her age with Sanfilippo, but the more therapy, the better.

When we ask Gabby, “You want to do a TikTok?” she smiles and gets happy.

Michael Patterson turned his passion for coaching football and mentoring into an effort to combat the effects of sarcoidosis.

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.