Families may feel a range of emotions after the diagnosis of a genetic condition. You may feel afraid of what is going to happen next. Or, you may have a sense of relief from learning what the cause of a medical problem is.
Find information and support
Families may feel a range of emotions after the diagnosis of a genetic condition. You may feel afraid of what is going to happen next. Or, you may have a sense of relief from learning what the cause of a medical problem is. The video below, "Receiving A Diagnosis: The Journey from Hope to Cope" , tries to put the feelings in perspective.
Information about your diagnosis can help you prepare for the future. Check out these websites for more information about a genetic condition:
- Disease InfoSearch is a database of information on genetic conditions. Organizations focused on specific diseases provide and approve the information in the database.
- Family Voices aims to achieve family-centered care for all children and youth with special health care needs and/or disabilities. Their clickable map can help you find specific resources in your state for everything from the right medical care to support groups and more!
- The Genetic and Rare Disease Information Center (GARD) helps people find information about genetic and rare diseases.
- ThinkGenetic, powered by IBM Watson, has an interactive genetic counselor to answer your questions about genetic conditions and symptoms.
- Genetics Home Reference explains how mutations affect human health. It includes information about genetic conditions.
Support groups can connect you with people that understand how you are feeling. You can search the following websites to find a support group for a genetic condition.
- At Disease InfoSearch support organizations serving a specific condition as well as general advocacy and support organizations are listed on the condition page. Detailed information is provided for each organization, including contact information and a direct web link to organization’s website.
- Parent to Parent USA can help you find emotional support and information close to home! Use their program finder to get find resources and get matched with a parent mentor in your state.
- Looking for others who share your experiences around genetic conditions or rare diseases? The Genetic Alliance Rare Disease and Genetic Conditions Support Community through Inspire is a free, online peer support community designed for individuals with rare diseases and genetic conditions, and their families, friends and caregivers. Simply create a profile (it's free!) and join to find support and inspiration along your journey.
- PatientsLikeMe allows you to share your experiences, learn from others, and contribute to research at the same time.
- Read the Genetic Testing Stories Monograph from Genetic Alliance for real stories and personal experiences with different kinds of genetic testing and the process of the diagnostic odyssey.
Become an Advocate
Finding for the resources and support you need can be a challenge, but these tools can help guide you through the process of becoming an expert advocate for your family and for yourself!
- Visit The Advocacy ATLAS for vetted resources to help parents and families advocate for what they need. This tool has great resources for every step of the advocacy process.
- Genetic Alliance offers an array of advocacy tools for individuals, families, and organizations.