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For Patients & Families

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Living with/Managing NF: Being faced with a diagnosis of NF can be extremely overwhelming. NF Northeast has created the following programs and resources to help patients and families cope with the challenges that come with NF. Our approach is simple: Science, Solutions, Support. We hope that you will find comfort in knowing that NF Northeast is with you every step of the way.

Matched for Hope - Peer Support

The NF Northeast Matched for Hope peer support program pairs newly diagnosed patients/families with trained peers who have experienced NF1, NF2-SWN, or schwannomatosis themselves or with a peer’s family member. Having a person to talk to who understands what you and your family may be going through when learning of a new diagnosis of neurofibromatosis (NF) or learning of a new complication related to NF can be incredibly helpful. For more information about the Matched for Hope program or to be matched with a peer, please contact our Director of Patient and Clinic Outreach at Apatterson@nfnortheast.org.

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Health Insurance for Neurofibromatosis and Allied Diseases

It is important that your health insurance company properly codes and bills specifically for the diagnosis/procedures regarding neurofibromatosis. The way that a procedure is coded by your health care provider can determine how your insurance may cover the claim. If a claim is denied, you should confirm that the claim was accurately and fully documented. For example, removal of a skin growth for cosmetic reasons typically is not covered by most health plans. The circumstances are different for a patient diagnosed with NF for the removal of neurofibromas, as both Medicare and Medicaid will cover this procedure because it is medically justified.

Be sure your provider knows the proper ICD-10 codes for neurofibromatosis:

  • NF1 – Q85.01
  • NF2 – Q85.02
  • Schwannomatosis – Q85.03 
  • Unspecified NF — Q85.00


Diagnostic Procedure Codes for removing neurofibromas
:

  • Excision of neurofibroma 64788
  • Excision of neurofibroma 64792

*Most insurance companies offer case managers who can assist you in coordinating medical care. Be sure to inquire about this added support, especially when numerous providers are involved and/or out-of-network medical care is needed.

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Find a Doctor in Your State

Connecticut

Connecticut Children’s Medical Center

Neurofibromatosis Clinic
Phone: 860-837-7500
Location: Farmington
Website: Connecticut Children’s Medical Center
Physicians: Francis DiMario, MD; Clinic Coordinator: Alyssa White, RN, BSN
Specialty: NF1, NF2, Pediatrics up to 18

Yale New Haven Hospital

Multidisciplinary Neurocutaneous Syndrome Clinic
Patients aged 0-30 with NF1, NF2 and Tuberous Sclerosis
Phone: 203-785-4640
Director: Dr. Asher Marks, MD, pediatric neuro-oncologist
This is a new clinic and will have their first clinic session on Wednesday, November 18, 2020. The clinic will include faculty with specialties in oncology, neurology, dermatology, opthamology, genetics, orthopedics and neuropsychology.

Also available at Yale to assist NF patients is Dr. Frank Buono. Contact him at frank.buono@yale.edu

Massachusetts

Massachusetts General Hospital NF Clinic

Pappas Center for Neuro Oncology
Phone: 617-724-7856
Location: Boston
Website: Massachusetts General Hospital NF Clinic
Physicians: Scott R. Plotkin, MD, Justin Jordan, MD
Specialty: NF1, NF2, Schwannomatosis, Adults, Children
Facility Type: Multi-Disciplinary, NF Consortium

Plastic Surgeon at Massachusetts General Hospital seeing NF patients:
Curtis Cetrulo, MD   617-643- 7316

Boston Children’s Hospital

NF Program
Phone: 617-355-6394
Location: Longwood Avenue, Boston, MA
Website: Boston Children’s Hospital
Physicians: David T. Miller, MD, PhD; Nicole Ullrich, MD, PhD
Specialty: NF1, NF2, Children
Facility Type: Multi-Disciplinary, NF Consortium

Tufts Medical Center

800 Washington Street
Boston, MA 02111

Physicians:
Dallas Reed, MD, Medical Geneticist, Obstetrics ~ 617-636-8100
John Gaitanis, MD, Chief Pediatric Neurology ~ 617-636-8100
Carl B. Heilman, MD, Neurosurgeon in Chief ~ 617-636-5860
Julian K. Wu, MD, Chief, Division of Neurosurgical Oncology ~ 617-636-4500
Nancy Pinnell, Genetic Counselor ~ 617-636-4540

New Hampshire

Locations: Lebanon, NH or Manchester, NH
John Moeschler, MD, Pediatrician, Geneticist ~ 603-695-2500
Mary Beth Dinulos, MD, Genetics ~ 603-629-8355
Sheila Upton, Licensed Genetic Counselor ~ 603-629-8355

New Jersey

Rutgers New Jersey Medical School – The Neurofibromatosis Center of NJ

Location: Newark, New Jersey
Phone: 973-972-2551
Director: Beth A. Pletcher, MD
Clinic Coordinator: Christina Kresge, MS, CGC
Website: Rutgers New Jersey Medical School
Specialty: NF1, NF2, Schwannomatosis, Pediatric and Adult

St. Joseph’s Regional Medical Center, Neurofibromatosis Diagnostic and Treatment Center

Location: Paterson, New Jersey
Phone: 973-754-4503
Director: Punita Gupta, M.D.
Clinic Coordinator: Lorien King, MS, LCGC
Website: St. Joseph’s Regional Medical Center
Specialty: NF1, NF2, Schwannomatosis, Pediatric and Adult

New York

Albany Medical Center Melodies Center for Childhood Cancer and Blood Disorders
Phone: 518-262-5513
Location: A Building, 5th Floor, 43 New Scotland Avenue, Albany, NY 12208
Website: Albany Medical Center
Specialty: NF1, NF2, Schwannomatosis, Adults, Children
Director: Lauren Weintraub, MD;
Physicians: Dr. John Pugh, Pediatric Neurologist  518-262-1700 – 391 Myrtle Avenue, Suite 1A, Albany, NY 12208

Albany Medical Center – Transitional NF Clinic
Specialty: NF1, NF2, Schwannomatosis, Adults
Director: Kelly Donnelly, MD, Adult neurologist, 518-262-5226
47 New Scotland Avenue, Mc 70, Albany, NY

John R. Oishei Children’s Hospital (OCH)
Neurofibromatosis Main Line: 716-323-6170
Location: 818 Ellicott Street, Buffalo, NY 14263
Website: Oishei Children’s Hospital
Program Specialist: Michelle Ventola, MVentola@kaleidahealth.org
Director: Dr. Matthew Barth, Pediatric Hematologist/Oncologist
Physicians: Dr. Cynthia Beatty – Neurology, Dr. Kathleen Bethin – Endocrinology
Dr. Steven Awner – Ophthalmology, Dr.Laurie Sadler – Genetics
*The NF Clinic is held on the first Wednesday of each month.

Memorial Sloan Kettering NF Program
Location: New York, New York
Pediatric Neuro-oncology Services – Matthias A. Karajannis, MD, MS
Phone: 212-639-5948
Adult Neuro-oncology Services – Anna Piotrowski, MD
Phone: 212-639-6767
Website: Memorial Sloan Kettering NF Program
Specialty: NF1, NF2, Schwannomatosis, Pediatric and Adult
Facility Type: Multi-Disciplinary

Montefiore Medical Center
Phone: 718-920-5505
Location: Bronx
Website: Montefiore Medical Center
Physicians: Mary Welch, MD, Neurologist/Neuro-Oncologist; Jerome Graber, MD, Neurologist/Neuro-Oncologist
Specialty: NF1, NF2, Adults

Children’s Hospital at Montefiore
Phone: 718-920-4378
Location: Bronx
Website: Children’s Hospital at Montefiore
Physicians: Adam S. Levy, MD, Genetics; Marcela DelRio, MD, Nephrologist; Fatema Malbari, MD, Child Neurologist & Neuro-Oncologist; Linda Lightstone, Social Worker
Specialty: NF1, NF2, Children to age of 21

Mount Sinai
Location: New York, New York
Website: Mount Sinai Neurology – Neurofibromatosis
Co-Director Adult Neurofibromatosis Clinic at Mount Sinai: Rebecca Brown, MD, PhD
Address: 1468 Madison Avenue Annenberg Building, 2nd FL New York, NY 10029
Phone: 212-824-8579
Co-Director Pediatric Neurofibromatosis Clinic at Mount Sinai: Praveen Raju, MD, PhD
Address: 1468 Madison Avenue Annenberg Building, 4th FL New York, NY 10029
Phone: 212-831-4393

New York Presbyterian Morgan Stanley Children’s Hospital Columbia University Medical Center
Location: New York, New York
Director: Wendy Chung, MD, PhD
Clinic Coordinator: Priyanka Ahimaz, MS, CGC
Phone: 212-305-2714
Website: New York Presbyterian Morgan Stanley Children’s Hospital Columbia University Medical Center
Specialty: NF1, NF2, Schwannomatosis, Pediatric and Adult

NYU Langone Health
Comprehensive NF Center
Phone: 212-263-9695
Location: 160 East 32nd Street, Level L3 Medical, 2nd Floor, New York, NY 10016
Website: NYU Langone Health
Physicians: Director, Comprehensive NF Center: Kaleb Yohay, MD; Devorah Segal, MD, PhD; Pediatric Neurology, Neuro-Oncology, J. Thomas Roland MD, Neuro-Otology; John Golfinos MD; Neurosurgery. Clinic Coordinator: Carole Mitchell, MS, RN – if you are hearing impaired, please email carole.mitchell@nyulangone.org.
Specialty: NF1, NF2, Schwannomatosis
Facility Type: Major Academic Medical Center, Adults, Children

New York University Division of Otology and Neurotology
Otology & Neurotology
Phone: 212-263-5565
Location: New York
Website: New York University Division of Otology and Neurotology
Physicians: Chairman of the Dept: J. Thomas Roland, Jr. FACS
Specialty: NF2
Facility Type: NF2 Major Medical Center

Roswell Park Comprehensive Cancer Center
Adult Neurofibromatosis Clinic
Elm & Carlton Streets
Buffalo, NY 14263
Director: Lindsay Lipinski, M.D.:  (716) 845-1508
Nurse Coordinator: Mary Rose Vater: (716) 845-1508
Website: Roswell Park
Specialty: NF1, NF2 and schwannomatosis

University of Rochester Medical Center
Galisano Children’s Hospital at the University of Rochester Medical Center (URMC)
Comprehensive Neurofibromatosis Clinic
601 Elmwood Avenue, Box 631
Rochester, NY 14642
Website: URMC Neurofibromatosis Program
Clinic Director: Alexander Paciorkowski MD, Neurologist
Clinic Coordinator: Carolyn Dickinson, PNP
Pediatric Patients: 585-275-2808
Adult Patients: 585-341-7500
URMC Opthamologist: Matthew Gearinger, MD 585-273-3937, 201 Crittenden Blvd, Rochester, NY 14642

Weinberg Plastic Surgery
Phone: 917-492-4200
Location: New York
Website: Weinberg Plastic Surgery
Physicians: Hubert Weinberg, MD
Specialty: Electrodessication

Pennsylvania

Children’s Hospital of Philadelphia
Neurofibromatosis Program
Phone: 215-590-7012 or 215-662-4740 or 215-590-7012
Location: 3501 Civic Center Blvd, Philadelphia, PA 19104
Website: Children’s Hospital of Philadelphia
Physicians: Director, NF Program: Michael Fisher, MD; Medical Director, NF Pediatric Program Rachel Hachen, MD, MPH
Specialty: NF1, NF2, Schwannomatosis
Ages: Adults, Children

Hospital of the University of Pennsylvania
Penn Neurofibromatosis Program
Phone: 1-800-789-PENN (7366)
Location: Philadelphia
Website: Hospital of the University of Pennsylvania
Physicians: Katherine L. Nathanson, MD
Specialty: NF1, NF2, Schwannomatosis
Ages: Pediatric, Adult

Penn State Health
Multidisciplinary Neurofibromatosis Clinic
600 University Drive
Hershey, PA 17033
Website: Penn State Health
Specialty: NF1, NF2, Schwannomatosis
Clinic Directors: Nidhi Shah, DO (pediatrics) and Dwait Aregawi, MD (adult)
Clinic Coordinator: Amy Tubbs, RN, BSN, CP

Children’s Hospital of Pittsburgh of UPMC
Neurofibromatosis Clinic
Phone: 412-692-5520
Location: 4401 Penn Avenue, Pittsburgh, PA 15224
Website: Children’s Hospital of Pittsburgh of UPMC
Physicians: Kathy L. Gardner, MD; Jenna Gaesser, MD
Specialty: NF1, NF2, Schwannomatosis
Facility Type: Adults, Children

Patient and Caregiver Guide

The Guide for NF Patients and Caregivers Transitioning (PACT) to Adult Care is a resource to help patients and caregivers with the process of transitioning from pediatric to adult health care. Based upon best-practice research and longitudinal experience from members of the NF Collective, this guide offers specific suggestions for precise periods of development during the NF patient’s maturation. Stressing increased patient autonomy while still honoring the vital partnerships with caregivers, this guide aims to be an effective resource for the NF community to best promote a smooth transition into adulthood for all impacted. In addition to the detailed suggestion sections, this guide also provides individuals with online resources and a glossary of terms to present a most comprehensive tool that, we hope, families will find of great value.

This was a collaborative commitment of the NF Collective, which is made up of seven nonprofits dedicated to solving specific problems in the neurofibromatosis community. Click Here to download the guide and also view the inspirational webinar featuring young adult NF patients who shared their personal experiences and advice on transitioning to adult NF care.

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Research & Clinical Trials

Click Here for the real-time listing of all clinical trials for NF.

If you are considering joining a clinical trial, Click Here for an in-depth, step-by-step guide written by the NF Network.

NF Registry

The NF Registry was started as a way to let people know about new clinical trials (new potential treatments) for NF. Patients can access updated facts and figures about the NF community and how NF changes over a person’s lifetime. It helps researchers understand one person’s symptoms vs. another’s. For more information or to join the Registry, Click Here. 

The NetworkEdge is a timely review that summarizes recent highlights from NF research and clinical trials sponsored by the NF Network in partnership with NF Northeast.

Bite-sized pieces of information allow you to easily find and focus on those topics of most interest to you, whether it is NF1 learning disabilities studies, NF2 clinical trial updates, or schwannomatosis news.

To read Volume 19 of The NetworkEdge, Click Here.

To read Volume 20 of The NetworkEdge, Click Here.

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Additional Resources

The Shaw Family NF2 Enrichment and Adventure Award

The Shaw Family NF2 Enrichment and Adventure Award provides opportunities for persons living with neurofibromatosis type 2-related schwannomatosis (NF2-SWN) in the northeast to “embrace the adventure bit” and embark on a journey of self-discovery, enrichment, and confidence building experiences!

This award honors the life and adventures of Duncan Shaw—an avid supporter of NF Northeast for over 15 years. In 2007, Duncan’s niece Leah was diagnosed with NF2-SWN. Inspired by her strength, perseverance, and unwavering positive attitude, Duncan took every opportunity to lace up his running shoes or hop on his bicycle to raise funds and awareness for NF2-SWN initiatives. Although cut short, Duncan lived a full life defined by a never-ending quest for adventure, enrichment, and learning. This, combined with Leah’s ability to never let NF2-SWN keep her from pursuing her interests, lead the Shaw family to create this award to fund unique experiences and opportunities for deserving NF2-SWN champions.

Qualifying adventures and experiences are as diverse as the individual and can include, but are not limited to: seasonal camps, afterschool programs, youth/young adult clubs or leagues, therapeutic/adaptive programs, and can encompass everything from the arts, chess, computer coding, horse-back riding, skiing, educational tours, foreign/sign language classes, experiential trips, and more! Awards can also be used for adaptive equipment for communication, gaming consoles, sports and recreation, etc. Further details are included in the application:

The Shaw Family NF2 Enrichment and Adventure Award

Social Security and Disability

NF Online Support Community – Inspire

The Neurofibromatosis Support Community connects patients, families, friends and caregivers for support and inspiration. The Neurofibromatosis Support Community is sponsored by the Neurofibromatosis Network in partnership with Inspire.

For more information, or to join the NF Support Community, Click Here.

Webinars for NF Patients and Families

Meredith Chambers, M Ed, Education Specialist on the Multidisciplinary Neurofibromatosis Team at Boston Children’s Hospital, has worked with NF Northeast to present webinars and Zoom recordings to help families have the most successful school experience possible.

NF Northeast and the NF Network are partners in advocacy efforts supporting NF and allied diseases. Like NF Northeast, the Network has a mission to find cures for NF by funding critical research, education, and awareness. We are happy to share links to the following educational webinars hosted by the Network.

Below is a link to an extensive library of webinars that NF patients and families find very helpful. They cover topics such as: Genetics of NF1, NF2 and schwannomatosis, school issues, coping with pain, seizures, cancer, and more.

Click Here to view the selection of webinars from Neurofibromatosis Network.

Click Here to view iNFo Fair session recordings on Neurofibromatosis type 1.

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NF Collective

The NF Collective is a group of NF-focused organizations dedicated to improving the lives of NF patients and their families. The group focuses on specific projects such as developing The Guide for NF Patients and Caregivers Transitioning (PACT) to Adult Care, a resource to help patients and caregivers with the process of transitioning from pediatric to adult health care. NF Northeast is a longstanding member of The NF Collective.

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Resources for Young People

NF Northeast College/Trade School Scholarship Program

NF Northeast offers scholarships for individuals who have neurofibromatosis and are continuing their education at a college/university or trade school after high school. We are accepting applications for 2024 scholarships – the deadline to submit applications is April 15th, 2024.

Applicants must live in the northeast (Massachusetts, Connecticut, Rhode Island, New Hampshire, Maine, Vermont, New York, New Jersey and Pennsylvania).

Grants are awarded annually to go towards college-related expenses, such as tuition/fees and books. Upon approval, the scholarships are sent to the student’s college in their name.

Click Here for the application.

3 horses with children on their back being led down a camp path by handlers
Double H Ranch

Double H Ranch is a summer camp located in the Adirondack Mountains of New York.

Each summer, hundreds of kids living with serious illnesses will have the chance to experience camp in a unique way – purposefully designed, fully adapted, and medically safe. Their team of trained staff and licensed medical professionals ensure a safe environment so your camper can focus on having fun. All programs are offered FREE of charge and NF Northeast is excited to be sponsoring children with neurofibromatosis to attend Double H Ranch.

In addition to summer camp, there are also unique programs in the fall and winter months to empower children and help them grow in a supportive and fun environment.

Visit the Double H Ranch website to learn more about the programs that are offered throughout the year.

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young boy in Team IMPACT gear smiling and signing with Mercyhurst Men's Hockey team, surrounded by coaches and teammates
Team IMPACT

Team IMPACT’s unique multiyear program signs children facing serious illness and disabilities onto college athletic teams across the country. Based on a clinical model, Team IMPACT guides a symbiotic relationship between teams and children focused on socialization, empowerment, and resilience, ensuring everyone involved has the personalized game plan they need to win – effectively building confidence and independence. Founded in 2011, Team IMPACT has matched more than 2,300 children with 700+ colleges and universities in 49 states, impacting more than 60,000 student-athletes.

NF Northeast is proud to partner with Team IMPACT in their pursuit to support children & families and get everyone in the game. 

For more information on program requirements and the application process, click here

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