by Katherine Busby Today is Rare Disease Day. It’s the day to recognize all those thousands of diseases that largely go unnoticed, diseases that receive little funding to researchers from drug companies and from the government because the patient population isn’t big enough to make it cost-effective. Collectively though, thousands suffer from these diseases and with the…
Hi my name is Carrie and I am a young adult living in the UK and was diagnosed with HH in 2013. I am writing this blog to show how easy it is for patients with HH to be misdiagnosed and undergo unnecessary procedures. Thankfully I have turned my life around but it wasn’t easy after…
Happy New Year to all of our Hope for Hypothalamic Hamartomas Patients & Caregivers! We realize everyone is busy this time of year, but we are asking you to please take time to enroll in the Rare Epilepsy Network (REN), which is a very important research study that the Hope for HH is participating in with the Epilepsy…
