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Mission | |
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 This support group and website is patient driven and managed with consultative access to the various treatment centers. Its purpose is to help raise awareness, provide emotional support and offer resources to patients and family members with Fabry disease, in an effort to minimize some of the uncertainties associated with this disorder.
The New England Fabry Support Group was started in an effort to meet the needs of Fabry patients living throughout the New England region. By establishing this supportive network, it allows patients to have access to other families, caregivers and insurance experts to help answer any questions or issues that arise.
The success of this support group will be dependent upon the involvement of the patients, family members and supportive networks. If you would like to get involved, please e-mail by clicking here.
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This website was developed to provide a supportive vehicle to obtain updated information and provide patients a vehicle to seek out and exchange information.
Patient meetings will be organized in a collaborative effort between the treatment centers and the Patients Advisory Group to insure that the most current information is being shared and relevant issues addressed in a timely manner.| This website was created by the New England Fabry Support Group and is supported by the National Kidney Foundation of Massachusetts, Rhode Island, New Hampshire and Vermont. |
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| Copyright © NEFSG. All rights reserved | ||