Grieving a Chronic Illness

by Jennifer Hill My understanding of grief changed the day my son received his diagnosis. Grieving had always been a way to let go; a process that allowed me to cope with, and eventually accept a loss. I would break down any emotional barriers, experience the pain and move forward to a place of peace. [&hellip

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MEDICAL INVOLVEMENT

By Ian Yeoh I have on occasion been criticized for being cynical about the medical profession, and often being critical of physicians and their professional conduct.  I have several extended family members around the world who are physicians, and they on occasion tease me about my contempt, noting that I myself had once wanted to [&hellip

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An Unusual Diagnosis

by Jennifer Hill Carter was born healthy and without complications. He was our first child, and other than a mild case of jaundice, we had no indication in those first couple of weeks that anything was wrong. Around one month of age, Carter developed a few concerning symptoms; a grossly distended abdomen, faster than normal [&hellip

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Advocating for ARPKD/CHF

As parents of children or adults living with this disease, you’re certainly accustomed to advocating for the countless medical and support needs for your child or yourself.  Nothing embodies “trial by fire” like a life threatening, chronic diagnosis you’ve never even heard of.  The day your child was born, you instantly became an advocate and [&hellip

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Oligohydramnios

by Ian Yeoh Oligohydramnios, or the lack of amniotic fluid, is a paramount issue that concerns the overwhelming majority of ARPKD babies. Oligohydramnios adversely affects fetal lung development, resulting in pulmonary hypoplasia or severe respiratory insufficiency. Amniotic fluid also cushions a fetus from physical trauma, and provides a barrier against sepsis and other forms of [&hellip

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Raising Teens With Chronic Illness

by Linda Bevec Ten to twenty million children and adolescents in the United States have some form of chronic illness or disability. Chronic refers to a health condition that lasts anywhere from three months to a lifetime. (www.healthychildren.org) ARPKD/CHF is chronic, progressive and lifelong; a disease full of much uncertainty as no two children seem [&hellip

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Patients and Patient Organizations Power Rare Disease Therapies Industry Trends

by Robin Robinson For most of the pharmaceutical industry, the focus on patient centricity is a relatively new phenomenon, and the industry continues to shift its focus to include patients as stakeholders when planning its marketing strategies, clinical trials, and R&D strategies. However, for the rare disease sector, the patient has always been front and center, [&hellip

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Bringing It Home

by C. Zak My son, who is affected by this disease, has sailed through life without much difficulty.  He played competitive sports, always had enthusiastic energy, and by most measures, excelled in life.  No outsider would suspect he was affected by a medical condition. Unfortunately, his condition status changed in the Fall of 2015.  My [&hellip

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My Cure for ARPKD/CHF 

By Linda Bevec My daughter Claire was 3 days old and fighting for her life in the NICU when the neonatologist confirmed what he had suspected — enlarged cystic kidneys, respiratory distress, dangerously high blood pressure, and failure to thrive.  It was ARPKD/CHF, the rare life-threatening kidney and liver disease we’re all familiar with in [&hellip

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“Lifetime Achievement Award” for Dr. Ellis Avner

Dr. Ellis Avner will be bestowed a “Lifetime Achievement Award” for his extensive work on childhood PKD research and understanding by the American Society of Pediatric Nephrology (ASPN) in 2016.  ASPN Founders’ Award Recipients are honored and recognized for their contributions and achievements.  As Emeritus Professor of Pediatrics and Physiology, Founding Associate Dean for Pediatric Research; Medical College of Wisconsin and Founding Director, Children’s Research Institute; Children’s Hospital [&hellip

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Standhope Ultra Challenge

Standhope Ultra Challenge is a four day, 83 mile point-to-point stage race through the Smoky and Pioneer Mountains! This is not a beginner-level ultra. The race peaks out at 11,000 feet over rough terrain and passes along the shores of Goat Lake, the highest lake in Idaho. When:  August 12th-15th, 2015 This ultramarathon is organized by [&hellip

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Platform for Engaging Everyone Responsibly (PEER)

Sharon F. Terry1,3, Matthew D. Smith1,3,4, and Robert Shelton2,3 1. Genetic Alliance; 2. Private Access; 3. Community Engaged Network for All; 4. Joubert Syndrome and Related Disorders Foundation Background: Patients are central in biomedical research, yet, are the least used resource. Patients should play a key role in deciding what treatments are best for them, [&hellip

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