Claritas and our partners want to help you during this difficult time. While you search for answers about your childs health and prognosis, you are on a diagnostic odyssey. It is not a journey you want to be on, and in addition to the stress of your child being sick, there are so many things to learn and to navigate. We offer several tools to help you.
It is difficult to keep track of complex health information, including your childs genetic test results and symptom descriptions. As you and your child go through the roller coaster of searching for a diagnosis, wondering what interventions might be effective, and how to manage symptoms, it is good to have help and support from those who have the shared experienced.
Claritas has partnered with the Genetic Alliance and other disease support organizations to offer the Platform for Engaging Everyone Responsibly (PEER). PEER is a tool to help you to keep track of your childs genetic test, signs, and symptoms. It enables you to make decisions and have control over how your data is used. You can decide to let researchers use it now, or you can store if for later use. We offer guides to help you through the process.
“I feel like no one knows my childs disease the way I do. It feels like each doctor asks about some parts of our experience, but no one wants to hear it all. PEER gave me a place to explain all of the signs and symptoms I was seeing. I also was thrilled to be able to share his health information and genetic test results with researchers all over the world. I want to make sure I am doing everything I can. I want to leave no stone unturned!
Mother of an ill child.
Please contact us to learn more: [email protected]
Genetic Alliance Disease InfoSearch®
You need information you can rely on. Trying to understand a disease, condition, or medical issue can be really confusing. You can search the internet, but you are inundated with information when you do, and dont know what is accurate or not!
Disease InfoSearch is an online database of almost 10,000 conditions and their related support and advocacy networks. The site offers families and healthcare providers hoping to find reliable information about the signs and symptoms of conditions, how to access support resources, and potential research opportunities. The site uses tested algorithms and filters that gather information on each condition in Disease InfoSearch from public databases to complement information provided and reviewed by disease specific advocacy organizations.
You can search for any condition, and learn where to go for support, read the latest medical information, view scientific and clinical experts affiliated with your condition, and review clinical studies relevant to your condition.
“The doctor told us the name of the disease and I could barely pronounce it. I looked in Disease InfoSearch and saw that the information was laid out in a way that made sense to me. I could tell where to go for a clinical trial, how to get free articles about the disease and what support groups to connect with. I know I can trust the Information I get from Disease InfoSearch. It is updated on the fly, so new information is on the site as soon as it is available.”
— Father of an ill child.