Rosenfeld Rekate Pioneer Award Recipients reflect on 20 years
Listen to an interview as Dr. Jeffrey Rosenfeld, Dr. Harold Rekate and advocate Lisa Soeby reunite after nearly 20 years and share their memories of how they met and together transformed HH surgery history.
Dr. William D. Gaillard, Chairman, 4th International Symposium on Hypothalamic Hamartomas, shares a brief overview of the 2 day conference and new opportunities for collaboration and research.
EpiCARE is the European network focused on rare and complex epilepsies. It comprises 28 specialist hospitals with expertise in epilepsy and research in 13 European countries. Hope for HH's Emma Nottt is representing HH
EpiCARE ePAGto advocate for care that is patient-centred and respectful of patients’ rights and choice. Next EpiCARE Annual Meeting scheduled for February 14-15 in Lyon, France.
Laser comes to the UK
Laser came to the UK at
GOSH hospital in London in 2019 with five HH ablations to date. Also, funding has been secured for an HH prevalence study run by Prof Helen Cross. Every pediatrician in the UK will be surveyed on the number of HH patients they have treated in order to get a better idea on prevalence.
Hope For HH Turns 10!
We celebrate 10 years of serving individuals and families in the HH community. We are grateful for the support of the patients, caregivers, volunteers, board members and members of our medical advisory board. We are hopeful and excited about what the next decade holds for research and new treatment options for HH.
Be the Change in 2020 and Beyond
Help us serve you better as we plan our programs and events in 2020 and beyond.
Take the short survey and join us in the effort to educate, support, and ultimately find a cure for HH Syndrome!
We are grateful to our community who through their efforts and generosity have raised over $24,000 through FaceBook fundraisers, awareness campaigns, epilepsy 5k races, HH Warrior shirts, art sales, and family bunco nights.
We are so honored to share HH patient stories on our website each and every year. This year we shared 10 individuals from around the world, including Brazil, Northern Ireland and the United States. The age range of these featured HH patients ranged from toddlers to young adults and reminds us that HH is a complex syndrome and the comorbidities can span a lifetime.
