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

Our parents wanted us to feel "normal," but we didn't feel normal at all.

Read the results of our Distance to Care survey for patients with lysosomal storage disorders.

Since getting a diagnosis of Klippel-Trenaunay syndrome at 27, I’ve been able to better advocate for myself and others with my condition.

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.

My interest is in remembering how afraid I was being in the hospital and not having a single person that I could talk to that understood what I was going through. That's why I've stayed connected.

Living with a rare disease brings you to a doctor’s office more than the average person. To make the most of your time with your doctor, it is important to be prepared, listen, and speak up in order to build rapport with them. Here are my five tips to help you do this and improve your next doctor’s visit:Take notes. When talking to a doctor, it is easy to nod and agree with everything they are saying. It may all make sense at that moment, but the second you leave the office, so much information is forgotten. Taking notes on your phone or in a notebook helps ensure you have all the information to look back on if you forget what is discussed.Organize and keep track of your medical records. Having your records and imaging readily available, especially if you are seeing a new doctor, is extremely helpful not only for the doctor, but also yourself. Doctors will want to review your history, but you yourself may want to review your records to mark down how you physically feel and compare them to the actual testing. Programs like PicnicHealth’s Timeline make it easy to integrate your medical records between all your doctors (PNH-related or not), hospital visits, lab work, etc., and keep them readily available in one place.Keep a running list of questions between appointments. Whenever a question pops into your head, write it down! Bring that list to your appointment in whatever form is easiest for you; write them out, keep them stored on your phone, or even print them out so you can write the answers next to each question as you ask your doctor. Listen to your doctor, but remember you do not have to be a silent participant. Try to make sure appointments feel like a discussion rather than a one-sided lecture. Don’t forget, it’s your health, and no one knows your story better than you do.Stay informed. You are your best advocate, staying informed about PNH news is a great way to understand the disease and any opportunities you might have for new treatments. There are also low-effort ways to participate in PNH research with observational research studies. PicnicHealth is a great platform for both understanding your medical history and contributing to observational research.Don’t be intimated. Your doctor may have extensive education and multiple degrees, but don’t be nervous around them, they are humans too, and are there to help you. The more relaxed you are, the easier it is to open up and give them the information they need to give you the best care.

We are excited to launch a new Lupus Nephritis real-world data research cohort that arms researchers with powerful data to support clinical research programs and drive evidence generation now and into the future.

Collaboration is key, and that's what we need more of in research.

Hollywood hasn’t always made an effort to depict rare disease on screen, and when it has, the results have been mixed.

If contributing my medical records to research can help someone else with wAIHA someday, then that’s wonderful.

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.

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

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

‍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.