Online Resources
The Arc Minnesota
The Arc Minnesota “promotes and protects the human rights of people with intellectual and developmental disabilities, actively supporting them and their families in a lifetime of full inclusion and participation in their communities.”
PACER Center (Patient Advocacy Coatlition for Educational Rights)
PACER Center enhances the quality of life and expands opportunities for people with disabilities and their families to help them reach their highest potential.
LDA of America (Learning Disabilities Association)
LDA provides support to people with learning disabilities, as well as parents, teachers and other professionals, with cutting edge information on learning disabilities, practical solutions, and a comprehensive network of resources.
PAF (Patient Advocate Foundation)
Patient Advocate Foundation is a national non-profit which provides professional case management services to Americans with chronic, life threatening and debilitating illnesses.
Camps
Camp New Friends
Camp New Friends offers children and teens with Neurofibromatosis seven days and six nights of summer fun and social connections.
NF Camp
NF Camp is the annual summer camp of the Children’s Tumor Foundation for teens and young adults living with NF. The camp takes place every year on the third or fourth week of July in Salt Lake City, Utah.
Government
Medicare.gov
The official US government site for Medicare.
National Institutes of Health
An agency of the U.S. Department of Health and Human Services, NIH researchers are “working to identify signaling pathways in the nervous system, with the hope of eventually developing drugs and techniques to help diagnose and treat NF.” The website contains multiple articles and links with more information on NF.
Social Security Administration
If you or a dependent has neurofibromatosis (NF), you may qualify for Social Security disability benefits. While the Social Security Administration does not list the condition, they will consider many of the symptoms typically suffered by those with neurofibromatosis in determining eligibility.
Social Security and Disability Resource Center
An informational website that provides answers on 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.
Medical Grants
NF Upper Midwest Individual & Family Support Grants
NF Upper Midwest provides financial assistance for people with NF living in Minnesota, North Dakota, or South Dakota, to assist with issues or emergencies related to the diagnosis.
United Healthcare Children’s Foundation
Dedicated to facilitating access to medical-related services that are not fully covered by available commercial health benefit plans.
Online Discussion Forums
Inspire-NF Inc.
An online support community for people and loved ones with NF1 and NF2.
Travel
Angel Flight Central
Angel Flight Central is a volunteer non-profit serving in need by arranging flights for health care or other humanitarian purposes. They service the entire Upper Midwest.
Lifeline Pilots
LifeLine Pilots facilitates free transportation in Minnesota and the Dakotas for medical needs such as on-going treatments, diagnosis and follow-up care.
Patient Travel Referral Program
The Patient Travel Referral program, a program of Mercy Medical Angels, “provides information about all forms of charitable, long-distance medically-related transportation and provides referrals to all appropriate sources of help available in the national charitable medical transportation network.”
Wish Granting
Make-A-Wish Minnesota
Dedicated to granting the wishes of children with life-threatening medical conditions to enrich the human experience with hope, strength and joy.
Wishes & More
Wishes & More is a Minnesota-Based, Tax Deductible Children’s Charity that is dedicated to granting the wishes of children with life-threatening medical conditions.