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The Advocacy ATLAS is a great tool to help individuals with special healthcare needs and their families advocate for what they need. This tool has great resources for every step of advocacy from youth leadership to transitioning from pediatric to adult medical care, and steps to employment success.

 
Get Involved

Many rare diseases have support groups. Check out Disease InfoSearch to see if there is one for you. If not, why not start one? Members of support groups provide emotional and information support for each other, but they can also combine their efforts to shape research on a disease or change public policy.

Pat's Story

In 1984, doctors diagnosed Pat Furlong's two sons, Christopher and Patrick, with Duchenne muscular dystrophy. Duchenne is the most common fatal, genetic childhood disorder. It affects about 1 out of every 3,500 boys each year worldwide. It currently has no cure.

But Pat didn’t accept “there’s no hope and little help” as an answer. Instead, she founded Parent Project Muscular Dystrophy (PPMD). PPMD is now the largest nonprofit organization in the United States focused entirely on Duchenne.

Under Pat's leadership, PPMD funds research, raises awareness, promotes advocacy, connects the community, and broadens treatment options. Her sons lost their battle with Duchenne in their teenage years, but Pat keeps fighting for a cure.

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.

Find Information

Information about your diagnosis can help you prepare for the future. Check out these websites for more information about a genetic condition:

Find Support

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!