Nf1 Parent Support

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NF Parent Guidebook Children's Tumor Foundation

    https://www.ctf.org/resources/nf-parent-guidebook
    The NF Parent Guidebook is a home-based, 160-page resource designed to provide support and education to you and your family. It will guide you through your journey with NF and associated learning, behavioral, or social challenges.

Internet Support Group for Parents of a Child With ...

    https://clinicaltrials.gov/ct2/show/NCT02153931
    - Studies show that Internet Support Groups (ISGs) can help parents of children with chronic conditions. Researchers want to find out if ISGs can help parents of a child with the genetic disorder Neurofibromatosis Type 1 (NF1). Objective: - To see if an ISG for parents with a child with NF1 can give the parents more social support and less anxiety.

Neurofibromatosis Support Groups Online DailyStrength

    https://www.dailystrength.org/group/neurofibromatosis
    Neurofibromatosis Support Group. Neurofibromatosis is usually noncancerous. There are three types of this condition. Type 1 usually appears in childhood, while Types 2 and 3 appear in early adulthood. Type 1 can cause bone deformities, learning disabilities, and high blood pressure. Type 2 can cause hearing loss, vision loss, and difficulty ...

Parent Support Groups - Autism Society of Newfoundland and ...

    https://www.autism.nf.net/parent-caregiver/parent-support-groups/
    Parent Support Groups are a parent engagement initiative designed to connect parents and create an active network of families. This group is open to parents/caregivers of individuals with ASD and is designed to provide support, resources and shared experiences between families.

NF Support Groups

    http://texasnf.org/Meet_Others_with_NF/Support
    Oct 27, 2019 · Whether you're contemplating surgery, chemo, or would just like to know what others are going through; our NF Connections Group is for everyone! If you are new to NF or have known about NF your entire life, just speaking to others who understand what it's like to live with NF is a great way to have support.

Support Groups Patient Information Johns Hopkins ...

    https://www.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics/neurofibromatosis/patient-information/support_groups.html
    Neurofibromatosis Mid-Atlantic provides information and support to people with neurofibromatosis (NF), their families and anyone interested in the disorder. Advocure for NF2 Advocure for NF2 is an advocacy group which offers resources on research and drug clinical trials for NF2 throughout the world.

Neurofibromatosis Network Support Group & Forum - Inspire

    https://www.inspire.com/groups/neurofibromatosis-network/
    The Neurofibromatosis Network Support Community connects patients, families, friends and caregivers for support and inspiration. This community is sponsored by the Neurofibromatosis Network, an Inspire trusted partner. More about this community

Neurofibromatosis type 1 - NHS

    https://www.nhs.uk/conditions/neurofibromatosis-type-1/
    Causes of neurofibromatosis type 1. NF1 is caused by a faulty gene. If the NF1 gene is faulty, it leads to uncontrolled growth (tumours) developing in the nervous system. In half of all cases of NF1, the faulty gene is passed from a parent to their child.

Neurofibromatosis type 1 - Genetics Home Reference - NIH

    https://ghr.nlm.nih.gov/condition/neurofibromatosis-type-1
    Oct 29, 2019 · Neurofibromatosis type 1 is considered to have an autosomal dominant pattern of inheritance. People with this condition are born with one mutated copy of the NF1 gene in each cell. In about half of cases, the altered gene is inherited from an affected parent.The remaining cases result from new mutations in the NF1 gene and occur in people with no history of the disorder in their family.



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