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Resources

The Loeys-Dietz Syndrome Foundation has developed various resources to support the LDS community.

Fact Sheets

There is still much to be learned about LDS. These fact sheets, created in collaboration with the National Marfan Foundation (NMF), provide a quick and concise resource of helpful information.

Loeys-Dietz Syndrome Facts

How To Find Out If You Have Loeys-Dietz Syndrome

Is It Loeys-Dietz Syndrome or Marfan Syndrome?

How To Care for Cardiovascular Problems

Orthopedic Care

Glossary

The medical terminology associated with a condition such as Loeys-Dietz syndrome can be confusing and overwhelming. The LDSF had developed a glossary to help define terms you may come across in your LDS journey.

LDSF Glossary

School Packet

As a parent of an LDS child, knowing how to communicate with your child's school can be challenging. Find a sample letter, emergency information and school-specific facts in this PDF packet to help open the lines of communication between you and your child's educational institution.

School Packet

Conference Presentations

Video presentations by medical professionals presented at the June 2012, LDSF conference in Baltimore, MD can be viewed on the LDSF YouTube channel.

Video presentations by medical professionals presented at the June 25, 2010, LDSF conference in Baltimore, MD can be viewed here:

Dr. Hal Dietz Presentation

Dr. Pamela & Anthony Guerrerio Presentations

Dr. James Black Presentation

Dr. Paul Sponseller Presentation

Dr. Duke Cameron Presentation

Questions and Answers from medical presentations at the June 25, 2010, LDSF conference in Baltimore, MD. Topics include: genetics, cardiac surgery, allergies and gastroenterology, orthopedic surgery and vascular surgery.

Questions and Answers

Peter Donato, a teen with LDS discusses his experience at the Living Successfully Panel at the 2010 National Marfan Foundation Conference in Houston, Texas.

Living Successfully Panel: 2010 NMF conference video

LDSF - Connections

People are starting to take notice of some of the things we do and people we impact. Read more about others with LDS and their journey or connect with us on Facebook.

Read the story of a family and their journey with LDS at the Mayo Clinic.

A Miracle For Daniela

Follow us on Facebook.

Matters of Heart - Newsletter

Our newsletter is designed to keep the members of our community informed and up-to-date on the happenings of the LDSF.

Fall 2008

Spring 2009

Summer 2009

Fall 2009

Fall 2010

Spring 2011

Summer 2011

Fall 2011

Spring 2012

Summer 2012

Fall 2012

Spring 2013

 

Annual Reports

2008

2009

2010

2011

2012