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National Volunteer Network
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The National Volunteer Network (NVN) is the backbone of the NMF’s successful strategy to fulfill its mission at the local level. The NVN is the interconnected web of Chapters, Network Groups, Support Groups, Telephone Support Contacts, and the many individuals and families that volunteer to support our shared mission at the local level.
The National Volunteer Network supports the NMF's mission in three crucial ways:
- Providing support and information to individuals and families affected by Marfan syndrome and related disorders
- Providing a strong volunteer force to implement NMF education and awareness programs in their communities
- Providing vital fundraising to support the NMF mission, education, research and support.
Becoming involved in the NVN is a positive way to help people live successfully with Marfan syndrome and related disorders. Activities provide members with opportunities to participate in a genuinely caring community that links NMF members locally and nationally.
CHAPTERS
The purpose of a Chapter is to carry out the NMF mission at the local level. As a legal entity, with elected officers and a bank account, chapters serve a vital role in saving lives and improving the quality of life for affected persons by providing education and awareness, support for members, and fund raising to strengthen and grow NMF programs.
NETWORK GROUPS
Local Network Groups enable members to meet in their own communities, without having to travel a long distance. Less formal than a Chapter, they have no elected officers or bank account. Some local groups operate as part of an established NMF Chapter located near them. Meeting topics and activities are directed toward informal support, education on Marfan syndrome and related disorders, outreach and fund raising projects. Establishing a Network Group is the first step to establishing a Chapter.
SUPPORT GROUPS
A Support Group focuses solely on psychosocial support for affected members and their families. It is strongly recommended that this type of group is run by a professional, volunteer facilitator. A Support group may operate as a service offered by a nearby Chapter or Network Group, or may be established independently.
TELEPHONE SUPPORT CONTACTS
Telephone Support Volunteers are the primary providers of NMF peer-to-peer support connections across the country. They are available by phone or e-mail and offer their own experience living with Marfan syndrome or a related disorder, as well as messages of hope, as a source of support to others.
FIND A LOCAL GROUP/LOCAL TELEPHONE SUPPORT CONTACT
Disclaimer: The National Marfan Foundation (NMF) is a health advocacy organization. The NMF does not provide medical advice or treatment. We are not a health care provider. It is important to realize that information provided by the NMF is not meant as a replacement for proper care from a doctor, therapist, etc. Information provided by the NMF is not a substitute for medical treatment or psychological care. It is vital that you talk with your health care providers regarding the diagnosis and treatment of Marfan syndrome and related disorders and your symptoms/features. Minors should consult with a parent/legal guardian when considering treatment and providers.
Health care provider information is supplied solely by the providers themselves and is not checked or warranted by the National Marfan Foundation. The NMF provides contact information for health care providers who are known to have seen patients with Marfan syndrome and related disorders. The NMF does not endorse or recommend individual health care providers. You are responsible for interviewing and selecting the practitioner. By requesting health care provider resources you understand and agree that the NMF and it’s affiliates are not responsible for any providers’ services or lack thereof.
To see a list of contacts, click on either the state name or the state on the U.S. map:
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