A basket of patient stories, research updates, and company news.
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.
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.
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.
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.
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.
Let’s face it: There’s a lot to manage when you embark on a caregiving journey for someone with Alzheimer’s disease. Whether you’re just starting out or you’re well along the path, there are symptoms to monitor, appointments to navigate, medications to manage, and a whole lot more. It’s easy to become overwhelmed—but a few strategic moves can go a long way toward alleviating stress and lightening your caregiver load. The following five tips can be your guide to supporting your loved one—and yourself—through the twists and turns of Alzheimer’s disease.
Long-chain Fatty Acid Oxidation Disorders (LC-FAOD) are a group of rare conditions that impair the body’s metabolism from breaking down certain fats from food into energy. Although there are an estimated 2,000-3,5000 people living with LC-FAOD in the U.S., researchers have limited data on how LC-FAOD progresses overtime and how it is managed in the real world.
PicnicHealth is excited to partner with Komodo Health to enrich its patient-centered real-world data Research Platform. This collaboration will enable PicnicHealth to unlock rich new insights about complex diseases and treatment outcomes.