Our friends at NORD & Oregon State University are launching a first of its kind quality of life study among adults with rare diseases called “AWaRDS Study: Adults with Rare Disorders Support.”
The study seeks to better understand the psychosocial support needs of people living with rare disorders and is looking at many diseases and disorders for similarities and differences. The findings will be shared with health professionals and organizations like Hope for HH to help better meet the needs of adults living with rare disorders. For more information, please check out the flyer AWaRDS_Flyer.
If you are an HH adult (>18), we encourage you to learn more about the study and participate here. Unfortunately, caregivers (who do not have the rare disease themselves) are NOT eligible to participate on behalf of their HH family member.
Some of you may also recall Hope for HH has been encouraging participation for all HH patients in the Rare Epilepsy Network (REN). The REN is another study focused just on the rare epilepsies. Eligible adult HH patients can participate in both!
Remember, studies like these will help researchers understand these rare conditions and work toward cures and better management. Participate in as many as you can! Use our chart below to figure out which ones are right for you or your loved one.