WE ARE NOT "JUST CARRIERS"

Uniting, Supporting & Empowering Females with X-Linked Disorders

Study Opportunity

Not Just Carriers: Experiences of X-linked Female Heterozygotes

My name is Jennifer Choi and I am a genetic counseling student at Northwestern University. I am inviting all X-linked female carriers and/or patients who are over the age of 18 and currently live in the United States to participate in a research study. The goal of this study is to bring all of the female carrier/patient voices together to better understand the needs and experiences of the X-linked carrier community. For the purposes of this study we will use the term X-linked carrier because of its popular usage, but this also includes females who have symptoms and are affected with an X-linked disease. Your participation is voluntary and will involve completing an anonymous online survey that should take about 15-20 minutes to complete. If you choose to participate in this study and complete the survey, you have the option to enter a raffle to receive one of twenty $25 Visa gift cards. If you have any questions, please contact me at jennifer.choi1@northwestern.edu. Please feel free to share the survey with other family members or members of your individual X-linked groups: https://northwestern.az1.qualtrics.com/jfe/form/SV_9nlwFltvqChHqrb.

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check out the results of our X-linked carrier survey!

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Key

 Aarskog Syndrome

Adrenoleukodystrophy (ALD)

 Alport Syndrome (XLAS)

Barth Syndrome (BS)

Becker Muscular Dystrophy (BMD)

 Börjeson-Forssman-Lehmann syndrome (BFLS)

Chronic Granulomatous Disease (CGD)

 Coffin-Lowry Syndrome (CLS)

 Creatine Transporter Deficiency (CTD)

Duchenne Muscular Dystrophy (DMD)

Fabry Disease

FG1 Syndrome (FG1)

 Fragile X Syndrome (FXS)

 Hemophilia

Hunter Syndrome

 Hyper IgM Syndrome (HIGM)

● Ichthyosis (XLI)

● Kennedy's Disease (KD)

 Lesch-Nyhan Syndrome (LNS)

L1 Syndrome

Menkes Disease

 Myotubular Myopathy (MTM)

Pelizaeus-Merzbacher Disease (PMD)

● Ornithine Transcarbamylase Deficiency (OTC)

TARP Syndrome

 Urea Cycle Disorder (UCD)

X-Linked Dilated Cardiomyopathy (XLDCM)

X-Linked Retinitis Pigmentosa (XLRP)

X-Linked Severe Combined Immunodeficiency (X-SCID)

Check out our Provider Network to find or recommend a great doctor with expertise or experience in treating female carriers of your X-linked condition!

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Please note: The information provided on this site is intended for your general knowledge only and is not a substitute for professional medical advice or treatment for specific medical conditions. You should not use this information to diagnose or treat a health condition without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions  you may have regarding your condition.