Marfan.org
Healthcare Insurance and Disability
WebThe Foundation for Health Coverage Education offers a state-by-state guide of healthcare choices. It’s also important to understand your rights when it comes to insurance, health-related laws, and social security and disability benefits. Here are some useful websites to help you increase your knowledge in these areas.
Actived: 9 days ago
Marfan Syndrome Signs, Symptoms, & Diagnosis Marfan …
WebWe provide a supportive community for everyone affected by Marfan syndrome, Loeys-Dietz, VEDS, and related conditions. Individuals, family members, medical professionals, and other healthcare providers can access information about Marfan syndrome, Loeys-Dietz, VEDS, and related conditions on our website, over the phone, or …
A Guide to Marfan Syndrome and Related Disorders
WebA Guide to Marfan Syndrome and Related Disorders. This book was created to help readers understand the basics of Marfan syndrome diagnosis and treatment, as well to provide guidance on the lifestyle and practical issues commonly encountered by people with Marfan syndrome or a related disorder. Perhaps you have recently been diagnosed with
EARLY INVESTIGATOR GRANT GUIDELINES
WebPlease direct all questions and correspondence to: Josephine Grima, PhD Chief Science Officer. The Marfan Foundation. 22 Manhasset Avenue Port Washington, NY 11050. Tel: 800-8-MARFAN or 516-883-8712 ext. 117 Fax: 516-883-8040 Email: [email protected].
Resources for Healthcare Professionals
WebResources for You. The diagnosis of Marfan syndrome is often complex. Our diagnostic tool, Marfan DX, offers the latest Z-score calculators for adults and children, nomograms, and a systemic score calculator.We also offer a checklist to help you in the diagnosis process and a referral letter, for patients you are referring to other specialists for an evaluation or testing.
2020 Atlanta Walk for Victory
WebWalk for Victory is The Marfan Foundation’s nationwide walk program held in various cities across the country to bring the Marfan syndrome and related conditions community together. The walks are non-athletic, family-oriented events that focus on fundraising and fun. Our 2019–2020 goal
Mental Health: Sharing Leads to Support and Hope
WebAt The Marfan Foundation, we recognize that the mental health component must be “front and center” so that individuals with connective tissue conditions feel better about themselves and have a better quality of life. It’s good to see when those who join our support groups realize they are not alone. The feelings shared and expressed give
Donate to Team Cassie 2018
WebTeam Cassie -- headed by Alix McLean Jennings and Ezra Jennings -- is in its 9th year and will be running the Superhero Half Marathon in Morristown, New Jersey on Sunday, May 20, 2018. Participants include Abby Conger, Alex Ruttenberg, Ashley & Matt Holland, DanaLynn Colao, Heather Toto, Hela
MARFAN SYNDROME DIAGNOSIS
WebMarfan syndrome is a disorder of connective tissue. Connective tissue holds all parts of the body together and helps control how the body grows. Because connective tissue is found throughout the body, Marfan syndrome features can occur in many different parts of the body. Most often the condition af-fects the heart, blood vessels, bones, joints
Nutrition, Weight, and Quality of Life – Part 2 of 3
WebNutrition, Weight, and Quality of Life – Part 2 of 3. April 7, 2016. By Hien Nguyen-Le. We recently shared Alix McLean Jennings’ story about how she worked with a nutritionist to bring her nine-year-old daughter Cassie, who has Marfan syndrome, up to a healthy weight. Today, in The Marfan Blog, we share the first part of Alix’s Q & A with
The Marfan Foundation’s 39th Conference
Web312-726-7500. Conference attendees must book their own rooms directly with the hotel to receive our discounted rates. The last day to book rooms and receive the discounted rate is Wednesday, June 21, 2023, by 1 pm CT. The discounted room rate will be available three days prior to and three days post-conference, based on hotel availability.
Nutrition, Weight, and Quality of Life
WebBy Hien Nguyen-Le. In recent blog posts, we shared Alix McLean Jennings’ story about how she worked with a nutritionist to bring her nine-year-old daughter Cassie, who has Marfan syndrome, up to a healthy weight. Then, we featured the first part of Alix’s Q & A with her nutritionist, Hien Nguyen-Le.Today, we offer the second and final part of …
Nutrition, Weight, and Quality of Life – Part 1 of 3
WebNutrition, Weight, and Quality of Life – Part 1 of 3. I am so excited about The Marfan Foundation’s initiative to focus on the quality of life issues that affect our community. As the mom of a nine-year-old girl with Marfan, I think about my daughter’s quality of life — at present and in the future — on a daily basis.
Top 10 Benefits of Remote Jobs for those with a Chronic Condition
WebHere are my ten benefits to working remote with a chronic condition: 1. Lower Daily Costs. Day to day charges are cut down or completely out when working from home. Without your daily commute, costs for gas or public transportation is …
What is Marfan Syndrome
WebEmergency Preparedness. Marfan, Loeys-Dietz (LDS), and Vascular Ehlers-Danlos syndrome (VEDS) are genetic conditions that affect the body’s connective tissue and as a result cause weakening of the arteries. Because connective tissue is everywhere, eyes, bones, joints and lungs can also be affected. Marfan, LDS, VEDS, and some related
Austin Regional Symposium: Living Better with Marfan, LDS, and …
WebThe symposium is for individuals affected by Marfan, LDS, and VEDS, and their families. Presentations will focus on both adults and children, and there will be plenty of time to answer your questions. You will have an opportunity to: Increase your understanding of your diagnosis and treatment. * Get your questions answered by local experts.
Jim Cavan: The Journey to Backpack Health
WebJim Cavan: The Journey to Backpack Health. September 24, 2018. By Jim Cavan. Maggie, with her mom, Jennifer, at the Foundation’s Boston Walk for Victory in June. As anyone with a rare disease will tell you, the health journey is extremely nuanced and complex. It’s difficult enough having to deal with the symptoms themselves, but managing
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