Entries by Markou

We’re part of the @ChanZuckerbergInitiative’s #RareAsOne Network

A group of 50 patient-led organizations that are strengthening rare disease communities, improving diagnosis, accelerating research and driving progress in the fight against rare diseases. www.RareAsOne.org Patients are a powerful force in driving research for rare disease — we provide critical insights about our diseases and are fueling significant discoveries.7,000 rare diseases, one community fighting for […]

Rare Mamas Rising Feature

One of our rare mamas, Niki Markou has been featured on the Rare Mamas website that is empowering rare disease moms. Rare Mamas contains blogs, podcasts and resources by rare disease mom founder, Nikki McIntosh who is a writer, speaker and advocate for mamas who care for children with rare disease. “It was an honor […]