Riley-day syndrome

Living with

Are there any groups that provide financial support for our medical bills?

Many children with special health care needs qualify for help through Medicaid or Medicare. Some states also have special medical plans just for children who have special health care needs but don't qualify for Medicaid of Medicare. Children's hospitals also often have financial aid for families who can't afford their medical expenses. In addition, many disease specific support groups have patient assistance funds. Begin by talking with your doctor, nurse, social worker, and genetic counselor about possible assistance funds they know. Then talk with the medical center or office's billing team to learn more about patient assistance funds and payment plans. Additionally, talk to national or local support groups that work with the genetic condition (or group of conditions) affecting you or your family. You may also search your area for foundations that cover specific regions such as the Marlee Factor Foundation that has a health grant program for families in the Southern Ohio area.

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What are some resources available for me to read about the psychological and social issues that are common when a family has a genetic condition?

Where can I read patient stories about living with all types of genetic conditions?

What are some resources available for me to read about the psychological and social issues that are common when a family has a genetic condition?

There are many great resources out there for you to read about the psychological and social issues for families with a genetic disease. Here are a few.

Where can I read patient stories about living with all types of genetic conditions?

There are several sites that have patient stories about people living with genetic diseases:

  • ThinkGenetic - This site has a growing database of patient stories from patients around the world.
  • Rare Diseases Europe offers stories from people with all types of rare genetic conditions. You can browse through the stories with pictures of the individuals who wrote them.
References

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