Raising Awareness About Anencephaly

Dealing with a birth defect like anencephaly is a traumatic experience, one that may make you want to reach out and help others. There are several ways you can work to make anencephaly a thing of the past, and to aid others who are going through the same experience you’ve been through before.

Participate in Research

Uncovering the genetic factors behind anencephaly is a key step in preventing future anencephalic pregnancies. Scientific studies are working to pinpoint what genetic variables contribute to anencephaly, but to do so they need willing participants who have been affected by anencephaly. The requirements to participate in these studies may vary; some may need blood or tissue from an anencephalic pregnancy, while others may test relatives or parents of anencephalic individuals.

  • Clinicaltrials.gov is a database of ongoing trials nationwide; you can search for anencephaly and other neural tube defect trials here.
  • Duke University is currently recruiting participants for an anencephaly and neural defect study.

Become Involved in Advocacy Campaigns

Genetic birth defect organizations have many advocacy campaigns that work towards raising greater awareness of particular disorders. On their websites, you can learn about public policy that affects genetic birth defects, including bills in Congress and upcoming legislation. You can also read about healthcare guidelines and genetic screening requirements. Here are the advocacy pages for several prominent genetic birth defect organizations:

Volunteer Your Time

The organizations dedicated to raising awareness about genetic birth defects could always use another helping hand. You could participate in fundraising events, help children who have genetic defects, or attend an awareness event. Spreading the word about genetic birth defects to your friends, family, and coworkers is another way to bring more attention to this important cause.

Donate Money

Groups like the March of Dimes and Spina Bifida Association do a variety of great work for families touched by genetic birth defects. They run programs exclusively for disabled kids, to let them enjoy themselves as much as any kid. They offer scholarships to people who suffer from genetic defects and hold national awareness conventions. These organizations also put enormous amounts of funding into scientific research about many types of birth defects. When you donate to these groups, your money will be going to fund these great programs.

Donate here:

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