“As I got older, my symptoms became more severe. While a crying baby is fairly common, vomiting, vocalizing, flailing, and pediatric wheelchairs are not. When we went out, people stared and sometimes asked uncomfortable questions. 'Is he contagious?' 'How did he get hurt?' It was tempting to stay home... but to experience the world, we needed to leave our house, and so we did.” ?? Hear from Abraham, a non-speaking, non-ambulatory young adult, as he reflects on how his parents navigated NYC to help him experience the world. ?? https://lnkd.in/gF4uzwCc
Rare Parenting
互联网出版
Online magazine for parents of children with disabilities, rare diseases and special needs
关于我们
Rare Parenting is a professionally written, medically-backed online magazine created to support parents as they navigate caring for their child with disabilities, rare diseases or special needs. Founded by Megan Nolan, a marketing and advertising media executive, and mother of a severely disabled child with a rare disease, Rare Parenting aims to bring together the best minds of the publishing world alongside those of the disability world. Rare Parenting's writers and editors come with journalism experience from the world's top publishers. Articles cover all parenting topics related to parenting children with special needs, to include managing symptoms, the family at large, as well as finances and self-care.
- 网站
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https://www.rareparenting.com
Rare Parenting的外部链接
- 所属行业
- 互联网出版
- 规模
- 11-50 人
- 总部
- New York
- 类型
- 私人持股
地点
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主要
获取路线
US，New York
Rare Parenting员工
动态
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Founder, Rare Parenting & Co-Founder, The Children's Rare Disorders Fund | Disability Advocate - FOXG1 child
This Thursday, I'll be leading a panel discussing the role patient advocacy orgs can play in supporting patient and caregiver mental health at the North America Rare Disease Summit 2024 in Chicago | If you're nearby, there's still time to secure a seat! | Rare Parenting
?? #SAVETHEDATE | While #RareDiseaseMonth has concluded, our commitment to fostering discussions and creating spaces to enhance the quality of life for those living with rare conditions continues unabated. We're excited to share that, following last year's successful event in New York, the North America Rare Disease Summit is back! Mark your calendars for July 11th in Chicago. This summit is a clear demonstration of the strength found in collaboration and unity within the rare disease community. By joining forces, we aim to speed up research, improve patient care, and achieve better health outcomes, charting a course towards a hopeful future for individuals impacted by rare diseases. #rds #NARDS #rarediseases #raredisease #rarediseaseday #rarediseaseday2024 #showyourstripes #bamberghealth
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Learn if your child is at risk for tethered cord syndrome, and what to expect during surgery - We take a look at symptoms, risks ands associated diseases, testing, surgery and care. #TetheredCord #PediatricCare #RareParenting https://lnkd.in/eruWd_rJ
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?? Tablets have come a long way to support #nonverbal children with @apple and @android communication apps! We partnered with @Lifelites to create a list of the top apps for your child! Check it out: https://lnkd.in/e2i8nyDv
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We are making your life a bit easier with our handy #specialeducation acronym list! Check it out here: https://lnkd.in/em8tcaWc
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There's still time to sign up for #summercamp, and there are quite a few options across the U.S. (and internationally!) available for children with #disabilities. Check out our list: https://lnkd.in/efuaeig5
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Our first Books for Parents #booklist is now out! Each title is written by mothers and fathers of children with disabilities. Whether you're on your own personal path or you're looking for a great gift idea, check out this list offering parents support through practical guidance alongside stories of love, loss, and perseverance. https://lnkd.in/e7vc5eXa
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Parents of kids with #disabilities are more likely to feel depressed, stressed, anxious and have marital problems. Did you know that practicing #mindfulness is super easy, and can help relieve some of this stress? Check out the article to learn exactly what is it and how to do it!
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Children who are unable to speak may be able to use a variety of devices to help them communicate. These are called #AAC (augmentative and alternative communication) devices. Here’s how they work and where to find them!? ? #rareparenting #nonverbal #nonspeaking #slp
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#Epilepsy scares parents for many reasons, but fearing your child's death often tops the list. While there isn’t a perfect, singular way to prevent #SUDEP, there are factors you can control. Understanding SUDEP, its causes, and addressing these factors can save your child’s life. Check out this article to learn some preventative measures: