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Advocacy
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Patient (Patient Advocacy Coatlition for Educational Rights)
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PAF provides patients with arbitration, mediation and negotiation to settle issues with access to care, medical debt, and job retention related to their illness.
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Camps
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Camp New Friends (CNF) offers children and teens with Neurofibromatosis (ages 7-15), seven days and six nights of summer fun and social connections.
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En EspaƱol
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Government
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An informational website that provides answers to questions about how to apply for disability, how to appeal a claim in the event of a denial, how to navigate the federal system, and how to avoid certain mistakes that are commonly made by applicants.
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Medical Grant
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Dedicated to facilitating access to medical-related services that are not fully covered by the available commercial health benefit plan
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NF 1 Photo Gallery
Former fashion photographer - turned - advocate works to -
NF 2
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An online discussion group for people with NF2. Comprehensive list of links related to NF2.
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An advocacy group advancing research
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NF Clinics in Minnesota
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Online Support
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An online support community for NF1 and NF2
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Online discussion group for NF1 and NF2
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A Facebook group
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Pain Management
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Something Special
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Enhances the life of a child fighting a terminal or life-threatening condition by providing extraordinary experiences including wishes, scholarships, memorials and more.
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Dedicated to granting the wishes of children with life-threatening medical conditions to enrich the human experience with hope, strength and joy!
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Travel Related
