Virtual NF Support Group
This is a wonderful opportunity to connect with others who experience similar challenges around NF—share information, ideas, and support one another.
To join this virtual support group, go to YahooGroups and find nfincmn_supportgroup.
Clinical NF Programs In Minnesota
Fairview University Medical Center
Patients who have not been previously diagnosed and/or are unsure about their diagnosis of NF are welcome to come to the Genetics clinic anytime. The Fairview University Medical Center - University of Minnesota Genetics clinic meets all day Tuesday in the Medicine Outpatient clinic. During a visit to the clinic, a patient can expect to see a genetic counselor and physician geneticist. Referrals can be made and appointments scheduled for consultation at the patient's request.
For more information, please call (612) 626-6777.
NF Clinic at Mayo Medical Center
The NF Clinic at Mayo Medical Center in Rochester, MN, provides comprehensive care for patients with NF and their families. Patients receive comprehensive care from members of an interdisciplinary team of medical experts. The team works together to provide diagnostic services, a personalized medical management and treatment plan, and genetic counseling.
For more information about Mayo Medical Center's NF Clinic or to schedule an appointment, please call Mary Kelly, Coordinator, at (507) 284-8198.
Neurocutaneous Syndromes Clinic Without Walls
Children's Hospitals and Clinics of Minnesota, Gillette Children's Specialty Healthcare, and Minnesota Epilepsy Group have joined to form the Neurocutaneous Syndromes Clinic Without Walls. The multidisciplinary team formed between the three organizations, and several area physicians, offers coordinated care to help families navigate the healthcare system and often complex care management plan.
Services
- Patients seen at Children's - St. Paul, Children's -
Minneapolis, and Gillette Children's Specialty Heath care.
- Diagnosis, treatment, care coordination, and long term
follow-up services for families with children who are affected by
neurofibromatosis
- Genetic counseling, genetic testing
- Communication and collaboration with members of the
child's healthcare team, including primary care physicians
- Assistance with school and insurance concerns.
For more information about the Neurocutaneous Syndromes Clinic, call our clinic coordinator Elizabeth Siqveland, pediatric nurse practitioner, or Dinel Pond, genetic counselor, at 612-813-7076 at (651) 220-6121. Phone calls are welcome from families and medical professionals.