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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.

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

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 Medical Center
Comprehensive NF Center
Phone: 212-263-9695
Location: New York
Website: NYU Langone Medical Center
Physicians: Kaleb Yohay, MD, Devorah Segal, MD Pediatric Neuro-Oncologist, J. Thomas Roland, Jr., MD; John Golfinos, MD Clinic Coordinator: Carole Mitchell
Specialty: NF1, NF2, Schwannomatosis, Adults, Children
Facility Type: Major Academic Medical Center

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

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

Matched for Hope

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 perhaps learning of a new complication related to NF can be incredibly helpful. The NF Northeast Matched for Hope program pairs newly diagnosed patients/families with trained peers who have experienced NF1, NF2 or schwannomatosis themselves or with a peer’s family member. 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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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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2022 NF Champions

1 – Cameron Bean: This is Cameron, also known as Mr. Cam or Mr. Mayor around town. He is eight years old and loves music, dancing, spending time with his family and friends, and FOOD! Cameron was diagnosed at birth with neurofibromatosis type 1 (NF1) due to the presence of café-au-lait spots and a first-degree relative with a diagnosis of NF1.

Cameron is delayed in all developmental areas and has received wonderful educational and therapeutic services through his town’s special education preschool program. Cam is followed by multiple medical specialists, including neurology, genetics, GI, and endocrinology. He was also recently diagnosed with epilepsy related to his NF. Despite the challenges that he faces, Cam amazes everyone he meets with his contagious joy, incredible spirit, and genuine love of life!

Cam’s parents are passionate about supporting NF Northeast and spreading awareness of neurofibromatosis. They are involved in numerous events throughout the year, including the annual Driving Out NF Golf Tournament in Glastonbury, CT and the Steps2Cure NF Walk in Hartford, CT.

2 – Tina Kell: Tina’s journey with schwannomatosis started during her endodontic residency at the age of 35, when she sought medical attention for a large growth under her mandible. After seeking a diagnosis from many physicians and undergoing painful, unsuccessful aspirations and a multitude of tests, it was then decided that surgery was the only option, as doctors suspected a malignancy. A few days after the surgery, she learned that it was a schwannoma- about the size of a golf ball.

With much relief that it was “nothing serious,” she went on to graduate with her Masters in Endodontics and moved back to Maine to work in a private practice with aspirations of opening her own practice one day.

Slowly, Tina started developing pain in her right arm. She had another tumor deep in the muscle in the upper portion of her humerus. After it was surgically removed, the biopsy result was another schwannoma. But this time the pain didn’t completely subside. It slowly grew in intensity, seeming to speed up and grow more painful throughout the months she was pregnant with her son. Soon the pain was traveling to her hand and back. She sought the help of multiple physicians and neurologists, again looking for answers. She was told all along that she had carpal tunnel syndrome, a common problem among practicing dentists. Knowing deep down this was not accurate, and with her pain increasing, she found Massachusetts General Hospital’s website and that there was a clinic for NF and schwannomatosis patients and their families. She immediately made an appointment.

Her pain had gotten to the point where she couldn’t rest her back on anything — a bed, soft chair or even a car seat. She would rock herself uncontrollably to help take her mind off the pain. Unbeknownst to her, she had a tumor at the nerve root of C7 in her neck. She was told by one surgeon that the tumor could be removed but it would likely paralyze her arm, leaving her unable to practice. Knowing paralysis would be the end of her new practice and that she would be unable to hold her newborn son, unable to pay back the astounding student loans or to provide for her family, she became her own advocate. Tina sought out another opinion by a different neurosurgeon. Dr. Jean-Valery Coumans compassionately listened to her and took into consideration all that she had worked for and gone through. He put a plan in place that would give her a good chance for a full recovery with a little luck, a lot of his skill, and even more praying. He was able to decompress and devascularize the tumor, since removing it completely would have rendered her right arm almost unusable. After several months of rest and with the help of family and friends, Dr. Tina Kell made close to a full recovery. She still has times where she experiences pain due to neuropathy, but certainly not to the same level or quality.

To date she has had three tumors removed and knows that her C spine is speckled with schwannomas and there are a few other smaller ones in her extremities. Every day she struggles with the pain and sometimes numbness inflicted upon her by these tumors as well as the fear that she may have passed this on to her son. Still, throughout all this, she persevered. She opened her own endodontic practice in Maine in 2012, which is thriving. She owes so much to God, Dr. Coumans, and the constant support of her loving son Chance, her friends, family and coworkers who have aided her through this journey.

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2022 NF Champions

3 – Leah Manth: Leah is a beautiful, intelligent 22-year-old woman who has neurofibromatosis type 2 (NF2). Leah currently has several tumors in her brain, spine and throat. She has endured 14 major surgeries in the past 11 years, is currently deaf in her right ear, has facial paralysis, balance issues, and a cervical spinal fusion.

When Leah was diagnosed over 14 years ago, there were no effective treatments for NF2 other than surgery. Because of growing awareness and research funding, Leah now receives Avastin and brigatinib, both chemotherapies that, through research and the lengthy process of drug screening and clinical trials, are now available treatment options for certain types of NF2 tumors.

Leah graduated from Niagara University in May 2022 and will attend Roberts Wesleyan College to further her studies in their Masters of Social Work Program.  She is an active NF fundraiser, and for the past 10 years has traveled to Washington, DC and advocated to Congress for increased federal funding for NF research. Leah is an avid outdoorswoman and enjoys hunting, fishing, kayaking, and hiking. Anyone who meets her is amazed at her courage and positive view on life. Leah is truly an inspiration to everyone who meets her.

4 – Joseph Brayman: Joseph was diagnosed with neurofibromatosis type 1 (NF1) as a young child. His entire family has been affected by NF, including Joseph, his three brothers, and his mother. Thankfully, medical treatments have come a long way over the years. His brother Peter had tumors on his skin and was bandaged at school as a youth, so he would not be bullied or have the tumors injured. This would not be the case today, as awareness and better treatment options for NF are continuously improving. Peter went on to college at Buffalo State and was a trained EMT. He did his best to live a productive life.

Presently, Joseph and his two younger brothers, Brian and Scott, are managing their NF. Both Brian and Scott live in a group home in Edmeston, NY, due to having developmental disabilities.  Joseph has been seeking medical care in Boston for treatment of his NF symptoms. He has not let his learning disabilities stop him. He tries to make the most out of life and enjoys spending time geocaching, hiking, camping, and networking with others who have NF. Joseph finds genealogy fascinating and spends much of his time researching his family’s history.

5 – Miguel De Grazia: Miguel is a very special young man in his twenties.  Born with neurofibromatosis type 1 (NF1), his medical and educational needs were unclear. Initially in foster care, his parents were informed he would need medical and supporting services throughout his life. Each stage of his development was celebrated, and each medical hurdle was met with a sense of relief. With additional medical and educational services, Miguel successfully completed high school and graduated from Quincy College in December 2021. Despite struggling with online portals and classes, as most students did during the pandemic, he completed his coursework while projecting a zeal for life.

Miguel continues to excel and amaze us and works part-time. He is looking at his options for attending two more years of college. He is committed to his family, his job, and his church. He continues to help people in need at food banks, and those in our most vulnerable sectors, the disadvantaged, the elderly, and children. He is passionate about our society, addressing what is right and just in our world, which will forever amaze us.  His parents, extended family, and friends understand that NF1 doesn’t need to stand in the way of leading a good life. NF has affected Miguel throughout his life, but never tarnished him or made him feel different.  He is a brave man and continues to acknowledge his support for other people affected by NF and reads medical updates on its progress towards a cure someday. Miguel represents one of the many faces of NF1, and that having NF1 should not limit setting sky-high goals.

6 – Elizabeth Hubbard: Elizabeth was born with Neurofibromatosis type 1 (NF1) and diagnosed at around age three. When she was diagnosed, her parents were given a lot of “she won’t this” and “she will this.” Early on, it was clear that she would need some extra support in school, and even with several support systems set up, she still struggled both academically and socially. Tumors developed on her face when she was young and she would try to hide them. 

Once she found herself settled into college at Landmark, a specialized school for students with learning disabilities, she finally started to come into herself. She is currently working as a Pharmacy Technician and studying to grow further in the field. 

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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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NF Northeast College Scholarship Program

NF Northeast offers college scholarships for individuals who have neurofibromatosis and are continuing their education at a college/university or trade school after high school. We are no longer accepting applications for 2022. Please check back in January 2023 for application information.

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.

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Additional Resources

Resources for Young People

Camp New Friends

A Fun, Supportive Environment for Kids with Neurofibromatosis.

For Ages: 7-17                                                
Duration: 6 days, 7 nights
Dates: July 10th – July 16th, 2022

Camp New Friends offers children and teens with neurofibromatosis (ages 7-17) seven days and six nights of summer fun and social connections. Camp New Friends serves to reduce the stigma and isolation that is often associated with neurological disorders and chronic health conditions. The camps also provide parents with respite.

Condition-specific camps have proven to be an effective way for children to learn more about their condition and to develop adaptive behaviors. At Brainy Camps, children learn from peers and adult volunteers who live effectively with these same health conditions and are offered hope for the future.

Dr. Kaleb Yohay, child neurologist and expert in NF at New York University Hospital, heads the medical team for the week of camp. Addition medical staff, including nurses, social workers, physical therapists and psychologists, are on-site 24 hours a day. Counselors are trained in dealing with the issues associated with NF. Many counselors and volunteers live with the condition themselves and share their experiences with the campers.

Campers participate and choose from a myriad of activities. Support groups and educational programs promote knowledge, skill development and social connections. Children and teens gain a better understanding of their condition, strengths. and self-worth.

Please contact njosey@childrensnational.org for more information.

Need-based scholarships are available and payment plans can be arranged.

Neurofibromatosis Northeast is proud to sponsor children to Camp New Friends each summer. Children with neurofibromatosis are quite often isolated and anxious. Camp helps break down the barriers faced by many who live with NF.

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Resources for Young People

NF Northeast College Scholarship Program

NF Northeast offers college 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 2022 scholarships – the deadline to submit applications is April 15, 2022.

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.

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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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