National Foundation for Ectodermal Dysplasias

Our mission is to empower and connect people touched by
ectodermal dysplasias through education, support, and research.

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Tips and Resources

Handbook for Families and Providers on Working Together to Improve Care

The National Initiative for Children's Healthcare Quality (NICHQ) has a handbook called Powerful Partnerships that is designed for both family members and healthcare professionals who are working together to improve care for children with special healthcare needs. Joining together in multi-disciplinary teams, family members and providers are increasingly working as equal partners to improve care.

Collaborating as equals may be new for family members and providers. This guide includes information and guidance on how to get the most out of this potentially powerful partnership.

 

Medicare and Other Benefits: Who Pays First?

Each insurance provider is called a “payer.” If you have Medicare AND other health insurance or coverage, there are rules to determine which payer should pay your healthcare bills first. Managing multiple systems of benefits is complex. Use this guide, compiled by the Centers for Medicare and Medicaid Services, to better understand how Medicare works in conjunction with other types of coverage. Always make sure to tell your healthcare provider about all of your insurance and coverage plans to make sure your bills are sent to the right payer to avoid delays.

 

Ten Questions to Ask Your Doctor After a Diagnosis

Receiving a diagnosis can be a challenging time for a family. You will have many questions for your doctor and other health care providers. Ten Questions to Ask Your Doctor After a Diagnosis is a good starting point for developing a list questions. You will also have questions specific to you, your child, and the diagnosis. Write down your questions and take them with you to your appointments to make sure you don’t forget to ask them. 

 

Keep A Copy of Your Medical Records

Empowered patients are those who become active members of their healthcare team. Obtaining and keeping copies of medical your records including images (X-rays, scans, CT, MRI) and lab results is good advice for any person receiving medical attention. For those who have chronic and/or rare conditions, it is even more crucial that these medical records are preserved. By keeping a copy of your records, you can reduce unnecessary duplication of tests and can assist new physicians or specialists in seeing the full picture of your health.  

One option for storing and transporting your records to and from appointments is to purchase an art portfolio holder. These carrying cases are usually sold in art supply stores and can easily accommodate large images and documents while providing privacy and protecting the items from the elements. Another idea is to keep electronic copies of this information (password-protected) on a jump drive that you can easily take with you to appointments.

It is easiest if you ask for a copy of documents, images, and test results after each visit. It will save you from a headache later if you do not have to remember where and when a particular test was performed.

 

A Toolkit to Keep Your Family Health History

“Conversations about family health history should be ongoing, not a one-time topic to be discussed and forgotten. What you learn can shape your future and even save your life.” – Sharon Terry, President & CEO, Genetic Alliance

With this sentiment in mind, Genetic Alliance offers a Does it Run in the Family? toolkit. A two-part guide available in both English and Spanish, the toolkit is a customizable resource available to families, organizations, and all interested communities. The toolkit consists of two booklets: “A Guide to Family Health History” and “A Guide to Genetics and Health.”

The first booklet explains the importance of family health history, how to collect it, and how to organize it; the second booklet outlines basic genetics concepts and gives information on the types of conditions that can run in a family. Each booklet can be tailored to best address the intended audience. Personal stories, photographs, and health condition information can all be changed to reflect the target community.

 

Dos and Don's For Teacher Advocates

If you are already collecting resources to help the teachers in your life advocate the best they can for their students with special needs, check out the article “Dos and Don’t for Teacher-Advocates” published in Newsline, by the Federation for Children with Special Needs.

GenesInLife.Org

In a time when searching for quality health information can be like searching for a needle in a haystack, Genetic Alliance has launched a new public resource, Genesinlife.org. Genes in Life harmonizes many existing resources and tools in a one-stop source for general information related to health and genetics services. On GenesInLife.org, individuals and families can learn how and why to collect a family health history and share it with a healthcare provider; understand the differences between various types of genetic testing and services, and figure out which genetics professionals to consult. The site will also host interactive features including blog campaigns encouraging comments and discussion as well as an “ask the experts” page, allowing users to request more information about the topics they care most about. 

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