Hope For Hypothalamic Hamartomas - May 2020 v.2
Let Your Voice Be Heard
At the 2019 HH International Symposium we presented initial data results of the HH Comorbidity Survey to the 55+ international clinicians and researchers in attendance. Hope For HH received extremely positive feedback from the clinicians and researchers regarding not only the data provided by the HH community but the high level of participation. We had over 250 individuals complete the survey. As a result, we were approached by several of the international doctors regarding the possibility of having the survey translated in additional languages to ensure their patient populations were able to participate. We are happy to announce the survey is now available in four languages (links provided below).
The purpose of this survey is as follows:

  • Identify comorbidities which may currently be undiagnosed or under-diagnosed, yet should potentially be included in the comprehensive “syndrome” definition.
  • Expand data collection in the adult population – research to date has been focused heavily on pediatric patients
  • Allow patients and caregivers to identify quality of life (QOL) concerns as well as symptoms they are struggling to obtain proper treatment for
  • Share the patient experience and the challenges/barriers to treatment due to the lack of a comprehensive definition of the Hypothalamic Hamartoma Syndrome
Due to this international request we have extended the deadline for completing the survey to extend through the summer of 2020. We urge everyone to participate! For those who have already completed the survey we'd like to THANK YOU and ask you to urge other HH individuals to participate. In the upcoming weeks we will be sharing the initial data results with the HH community on our blog so make sure you are following our Facebook page and blog .

Below are the links to each of the translated surveys.
Please take 15 minutes and complete the survey today! 
Brain Tumor Awareness Month
#TurnMayGray and spread awareness of hypothalamic hamartomas (HH) Help us by starting a Facebook Fundraiser and sharing information about these rare brain tumors that cause medication-resistant laughing (gelastic) seizures, precocious puberty, hypothalamic obesity, cognitive deficits, psychiatric conditions and other debilitating symptoms. With the support and generosity of our community and volunteers, Hope For HH continues to work on advocacy, research, patient assistance, education, access, empowerment, and much more. Our collective goal is to improve the quality of life of people living with this rare tumor and it's associated complex comorbidities.
Ways to Help the HH Community
Share Your Skills and Give HOPE

If you are interested in becoming a volunteer for Hope for HH, to get the process started we invite you to complete the following  Volunteer Inquiry Survey to gather a bit more info about you and your interests.

Remember we are a 100% volunteer run non-profit organization and the only one in the world with a focus on hypothalamic hamartomas. We are stronger together and urge you to help us on this mission to help those with HH.
Share Your Story and Give Others HOPE

If you are a young adult or caregiver and would like to share your story – please reach out to us. Please complete this form and our volunteers will contact you with next steps. You don’t have to be a professional writer, we are happy to help you write your story!

Hope For Hypothalamic Hamartomas | www.hopeforhh.org | info@hopeforhh.org