How We Can Help

//How We Can Help
How We Can Help 2018-10-17T08:16:52+00:00

How We Can Help

 

I or someone I care about was recently diagnosed

The National Fragile X Foundation assists, educates, and provides personal support to individuals and families living with Fragile X disorders and inheritance. Contacting us will help you realize that you are not alone, offering you great comfort at a critical time. It will help you relax into what is ahead of you.

I am pregnant and just learned of a Fragile X diagnosis

Whether you or a relative have been diagnosed as a premutation carrier or a full mutation, please email us at treatment@fragilex.org and we will help get you connected with a genetic counselor right away.

I am having trouble finding medical professionals who can help me or my loved one

The National Fragile X Foundation offers free resources such as referrals to clinics and specialists. When you go to a Fragile X clinic, you will not hear, “Fragile what?” Fragile X clinics are staffed by experts who can answer your questions. It’s like getting a whole team on your side of the field after you feared you’d be alone.

Consensus Documents: The professionals who are part of the National Fragile X Foundation’s Fragile X Clinical & Research Consortium (FXCRC) and who are committed to the well-being of the Fragile X community, along with the parents on the consortium’s Executive Council, diligently update the treatment guidelines and recommendations (aka, consensus documents) that were first drafted in 2011.

I and/or my family are confused about what a Fragile X diagnosis means

If the questions get too complicated, especially around the genetic aspect, have them call or email us and talk to our genetic specialist. We also have information on how to talk to family, friends, teachers, and others about Fragile X.

I would like to connect with other individuals and families who are living with Fragile X

Community Support Network: The NFXF Community Support Network, including local chapters, offers support, resources, and networking that can help you in a variety of ways:

  • They know healthcare and education professionals in your area.
  • They organize family activities and mini-conferences.
  • They are there to provide support in whatever way you need.
  • They are people who understand your journey.

For international groups outside the U.S., see our International Family Support Network & Clinics.

Join Us on Facebook: You can be as active as you want to be on Facebook. You can read what others have written, get ideas and resources, post questions for others to answer, and establish relationships that can become great sources of support to you—and perhaps last a lifetime. All with just some clicks of your keyboard.

Attend the next NFXF International Fragile X Conference: When you go to an NFXF International Fragile X Conference you will learn the latest information about the condition and get connected to many people and resources that can help you on your Fragile X journey. While the conference can seem overwhelming at first, you will meet the most welcoming group of people you have ever met. Please note that this conference is held every other year, our next conference is in 2020.