Blog

Webinar Recording: Organizing Your PNH Medical Records in 2023

How Novel Therapies are Impacting Hemophilia A and B

As a bleeding disorder, Hemophilia has the potential to create some serious problems for the patients that live with it every single day. Without the ability to properly clot your blood, it can be difficult to take many risks that could lead to excessive bleeding. Plus, this bleeding can occur internally at just about any time. This can significantly lower the patient’s overall quality of life, but there is a chance that it doesn’t have to be that way.

2022 Multiple Sclerosis Research Update

At the 38th Congress of the European Committee for Treatment and Research in Multiple Sclerosis PicnicHealth data was featured in two posters presented by our research partners. Continue reading below for more information on how your contribution is supporting leading Multiple Sclerosis researchers.

5 Tips to Improve Your Next Doctor’s Visit

I was diagnosed with paroxysmal nocturnal hemoglobinuria (PNH), a rare blood disorder, three years ago. Every day is a new adventure living with a rare disease; some days I feel strong and empowered with my new lifestyle, and other days I am defeated and discouraged when I am not feeling well. Managing your fatigue, migraines, or brain fog symptoms can be difficult when you aren’t sure when the bad days are coming. I get it. I’m in the same boat! There are times I choose between listening to my body or getting things done that need to be completed, such as scheduling doctor appointments.

PicnicHealth raises a $60m Series C to expand patient-centered real-world data

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.

My PNH Journey: The Fight Continues

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.

My PNH Journey: The Power of a Diagnosis

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.

How Real Patient Experiences Can Make a Difference in the Fight Against Alzheimer’s

It’s an exciting time for Alzheimer’s disease research. The FDA approved the first new drug for Alzheimer’s in nearly 20 years in June 2021, and other potential treatments, targeting amyloid plaques in the brain, are making their way through clinical trials.1, 2 It’s a glimmer of hope for Alzheimer’s patients, who number over 6 million in the U.S. alone.