Hope For Hypothalamic Hamartomas - May 2020
International HH Research and Awareness
European Conference on Rare Diseases & Orphan Products (ECRD)
We are excited and honored to be presenting two posters on hypothalamic hamartomas at this year's conference. The European Conference on Rare Diseases & Orphan Products (ECRD) is recognized globally as the largest, patient-led rare disease event. Due to COVID-19, this year's event will now take place uniquely online from May 14-15.
We urge researchers and clinicians to register for this virtual event. REGISTER NOW for ECRD 2020 online

Poster #1 is titled ' Transforming Care: The International Impact of a Ten-Year Doctor – Patient Group Partnership on the Understanding and Treatment of a Rare and Complex Epileptic Syndrome ' will be presented under the conference theme ' Theme 3: Share, Care, Rare: Transforming care for rare diseases by 2030 '.

Poster #2 is titled ' The Rare and Complex Epilepsies - Common Unmet Needs within the Patient Community ' and was created in collaboration with EpiCARE , European Patient Group (ePAG) , and several other rare epilepsy patient advocacy groups.

We'd like to thank Board Member, Emma Nott , and our international Medical Advisory Board for their time and expertise which provided this extraordinary opportunity to raise global awareness of this rare disease.
ENDO 2020
The first research poster as a result of the HH Comorbidity Survey data has been accepted for inclusion at the The Endocrine Society's ENDO 2020 Conference .

This poster titled ' Prevalence of Self-Reported Endocrine Comorbidities in Hypothalamic Hamartoma Patients: Data from the Hope for Hypothalamic Hamartoma Survey' will be part of ENDO Online 2020. This June 8 to 22 event is completely free. Register today for ENDO 2020. .

We would like to thank Barrow Neurological Institute, Dr. Kevin Yuen and Medical Advisory Board members, Dr. John F. Kerrigan and Dr. Oliver Oatmen for their dedication to the HH community and for leading the charge for sharing the preliminary results of the HH Comorbidity Survey with other clinicians and researchers.

Endocrine Society is a global community of physicians and scientists dedicated to accelerating scientific breakthroughs and improving patient health and well being.
Rare Diseases Clinical Research Network COVID-19 Survey
The Rare Diseases Clinical Research Network (RDCRN) is conducting this study with funding by the National Institutes of Health (NIH). The novel coronavirus pandemic is impacting people with rare diseases and their families. Those impacts can be related to physical health, emotional health, availability of supplies, access to care, or other problems. Your responses may help researchers understand the impacts of COVID-19 on the rare disease community.
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.
Hope For Hypothalamic Hamartomas | www.hopeforhh.org | info@hopeforhh.org