The NF Clinic Network (NFCN)

Background and clinic requirements

The NF Clinic Network (NFCN) was established by CTF in 2007 to standardize and raise the level of NF clinical care nationally and integrate research into clinical care practices. Any NF clinic in the US can apply for Affiliate Clinic status. Applications are reviewed by the CTF Clinical Care Advisory Board and accepted or declined based on several factors including NF expertise, patient volume, multidisciplinary approach, research support and connections with local CTF chapters. Currently, there are 50 NF clinics in the CTF NF clinic network.

The NFCN recognizes clinics that:

• Provide comprehensive medical care to individuals with NF
• Foster patient education; and
• Encourage participation in clinical research trials and the NF registry

To remain active as an NFCN Affiliate Clinic, clinics must submit an annual report at the end of each calendar year. At that time, clinics may apply for annual NFCN clinic stipends for use the following year. In 2015, NFCN Affiliate Clinics were eligible to apply for stipends to fund a local symposium or educational activity and clinic travel to attend the annual CTF NF conference.

Volunteer involvement with clinics

There are several ways that volunteers can interact with clinics including assisting with clinic activities such as symposia and support group meetings, compiling/distributing patient folders and family interactions during clinic visits. It is appreciated if volunteers inform Heather Radtke and the regional community relations manager of existing or potential involvement with clinics (hradtke@ctf.org).

Guidelines for volunteers involved in clinic visits

• Review the institution or clinic requirements to be present in clinic such as (likely the same as the hospital requires of all volunteers):
  • Background check
  • Immunization records/TB test
  • HIPAA (privacy) training
  • Identification badges
  • Dress code
• Together with clinic staff, define the role of volunteers in clinics, such as:
  • Educate families about CTF
  • Recruit for registry or other research efforts (please see NF Registry)
  • Emotional support for family and patient
  • Inform of upcoming events
• Personal introduction
  • Introduce yourself as a volunteer with CTF
  • If comfortable sharing, explain your main reason for becoming a volunteer (family member with NF or individual with NF)
• Develop list of items to bring to clinic such as:
  • New diagnosis folder and other brochures
  • Flyers about upcoming events
  • Other support resources
• Professionalism
  • All volunteers should follow proper dress codes
  • All volunteers should maintain a positive attitude
  • All volunteers should be sympathetic and recognize the variability of NF and the extreme complications or situations that may present in clinic
  • All information discussed in a clinic setting should remain confidential and not shared with others
  • No volunteers should offer medical advice – all medical questions should be referred to the child’s physician

Expectations of clinics with volunteers

While it is the hope of CTF to have full cooperation from clinics with our staff and volunteers, we must respect their autonomy to make these decisions and accommodations based on their preferences. Our requests for clinic involvement in events, clinic volunteers or other CTF resources is not required under the current agreements. In addition, the frequency of contact of clinics by staff and volunteers should be considered given clinician's busy schedules and high demands. Please report clinic concerns or conflicts to Heather Radtke (hradtke@ctf.org).

Map of NF Clinic Network Affiliated Clinics in the United States below.