Pachyonychia Congenita Support

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Pachyonychia Congenita - Dermatology Advisor

    https://www.dermatologyadvisor.com/home/decision-support-in-medicine/dermatology/pachyonychia-congenita/
    Enrollment in the International Pachyonychia Congenita Research Registry and involvement with the Pachyonychia Congenita Project should be offered for social support and patient advocacy purposes as well as possible financial help with genetic testing costs.

Patient Support Meetings - Pachyonychia

    https://www.pachyonychia.org/patient-support-meetings/
    Patient Support Meetings “At the Patient Support Meeting (PSM), for the first time I looked into the eyes of another person with the same disease, saw them move like me, saw them use the same tricks that I use to get through their day.

Pachyonychia Congenita - Thick Nails & Calluses NIAMS

    https://www.niams.nih.gov/health-topics/pachyonychia-congenita
    Pachyonychia congenita is very rare. It causes thick nails and painful calluses on the bottoms of the feet, and sometimes blisters on the palms of the hands. In about half of all cases, pachyonychia congenita is passed down from a parent. In the other cases, no one in the family has the disorder.

Pachyonychia Congenita Project - NORD (National ...

    https://rarediseases.org/pachyonychia-congenita-project/
    Dec 07, 2015 · PC Website pachyonychia.org – a website specifically designed to provide education and support for Pachyonychia Congenita patients, family members and for clinical and research professionals. PC NewsBrief – a monthly newsletter for patients providing news and tips; PC Patient Support Meetings – annual meetings for patients

Pachyonychia Congenita Foundation for Ichthyosis ...

    http://www.firstskinfoundation.org/types-of-ichthyosis/pachyonychia-congenita
    When patients register with the patient advocacy group Pachyonychia Congenita Project (PC Project) through the PC Registry, not only are they able to receive genetic testing, they are invited to be part of the worldwide PC community, which gives them access to patient advocates, help from physicians who are knowledgeable about PC, monthly patient news briefs, a private social media group, and the opportunity to attend patient support …OMIM: 167200

Pachyonychia congenita: A rare genodermatosis

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3752484/
    Pachyonychia congenita (PC) is a rare genodermatosis with only 450 cases reported since 1906. It is of two types, type I due to mutation in genes 6a and 16, and 6b and 17 in type II with an autosomal dominant inheritance in both types. A 22 yr old female ...

Pachyonychia Congenita - GeneReviews® - NCBI Bookshelf

    https://www.ncbi.nlm.nih.gov/books/NBK1280/
    Jan 27, 2006 · Pachyonychia congenita (PC) is characterized by hypertrophic nail dystrophy, painful palmoplantar keratoderma and blistering, oral leukokeratosis, pilosebaceous cysts (including steatocystoma and vellus hair cysts), palmoplantar hyperhydrosis, and …

Pachyonychia congenita - Genetics Home Reference - NIH

    https://ghr.nlm.nih.gov/condition/pachyonychia-congenita
    Oct 15, 2019 · Pachyonychia congenita is a condition that primarily affects the skin and nails. The signs and symptoms of this condition usually become apparent within the first few years of life. Almost everyone with pachyonychia congenita shows some signs of hypertrophic nail dystrophy, which causes the fingernails and toenails to become thick and abnormally shaped.



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