Rare Disease Day

Rare Disease Day

Rare Disease DayIt's the ninth international Rare Disease Day where hundreds of patient organizations from countries and regions all over the world will hold awareness-raising activities based on the slogan Join us in making the voice of rare diseases heard. What will...
Feb 28 is Rare Disease Day – HH is Not Alone

Feb 28 is Rare Disease Day – HH is Not Alone

Feb 28 is Rare Disease Day – HH is Not AloneA disease, disorder, illness or condition affecting fewer than 200,000 people is considered RARE.There are 7,000 rare diseases and disorders.1 in 10 Americans or 30 Million people have a rare diseaseMore than ½ of people...
Meet Faith

Meet Faith

Faith’s Story My pregnancy with Faith was difficult, I developed a strange rash, which we never really got to the bottom of.  Due to the rash I had an ultrasound at 32wks to check the size of the baby.  It was during this scan that the radiologist noticed there was...
2017 International Epilepsy Day

2017 International Epilepsy Day

 In honor of International Epilepsy Day, an event created to promote epilepsy awareness in more than 120 countries, Hope for HH would like to highlight and thank our own international support community!In the last 5 years the Hope for HH Medical Advisory Board...