Tenth “Day and Way” of Caring for the Caregiver Regularly connect on-line with support groups
Dear NNPDF Families and Friends,
Connecting with other NPD families and patients can offer a wealth of information. Others may be able to offer suggestions and tips on care for your loved one. They may know of connections to retailers or online resources for clothing needs, equipment, exercise and therapies and family support. They might be able to recommend a specialist in another city when your doctor just isn’t helpful enough. They may simply offer moral support, much needed for those with difficult medical challenges.
Treatment involves more than routine medical diagnosis, hospitalized care or even the prescription of drugs. When confronted by illness, family caregivers and patients seek professional help and advice from their doctors, and also rely on support from family members, peers and fellow patients. Patients’ with genetic diseases are no exception to this reality. They too face complexities and complications that require a network of professional support staff, family, and friends.
To this end, the National Niemann-Pick Disease Foundation offers several avenues of Social Networking tools available to our NPD membership. These networking tools offer a variety of services and resources to assist our families, caregivers and patients as they work to cope and adapt to the lifestyle that is often dictated by the complications of Niemann-Pick Disease.