What Will INCENT you To Act?
Hope for Hypothalamic Hamartomas is a founding member of the Rare Epilepsy Network - a registry of rare epilepsies including HH - to answer critical questions about the best HH treatments, support, management and side effects.
To date, 63 patients have registered, 45 people have completed at least one module and 34 have completed all modules. Our HH community has met 54% of our goal. We THANK those that have registered and completed the registry early.
We still need 52 more people to register to have a statistically significant representation. We set this goal because it is believed there are 304 kids in the US with "hypothalamic hamartomas with epilepsy" and 30,000 adults and children with "HH with epilepsy" worldwide.
We would like to know...
What are the barriers to YOUR participation?
What will INCENT you to participate?
And if you have registered but not completed the registry - what will motivate you to finish?
Please take 5 minutes to answer our 5 question survey here and we will send you $5 Starbucks card.* Anyone who has registered and completed the registry is not eligible.
Thanks,
Hope for HH Board & parents
