Most patients and families in the Niemann-Pick community are too familiar with the need to travel to access the specialized medical care they need. Among our many services at NNPDF, patients often turn to us to find hospitals and doctors that have specific experience in treating Niemann-Pick disorders. We maintain a list of Comprehensive Care Centers that can help patients and families have access to Niemann-Pick specialists.
Despite these efforts, in many cases patients do not live in areas where medical specialists with experience in Niemann-Pick disease are nearby. They must then depend on non-specialists for much of their routine and emergency medical care. In these cases, it is important for patients and caregivers to identify the best strategies and options to build a strong local care team. These efforts are essential to make sure that patients have access to the full range of care services they need.
By taking the time to research and build a strong local care team, patients can access a range of benefits including convenience, faster access to care, less time off from work or school, reduced costs and the comfort of knowing that support is available close to home if there is an emergency.
The best local team can differ significantly for different patients based on their health status and needs. At a minimum, every Niemann-Pick patient should have a dedicated local primary care physician (PCP) to provide support for routine health needs. If the PCP is not familiar with Niemann-Pick disease, the patient and caregiver together should work to provide information about the disease that can help inform and guide treatment. This can also help the PCP be better prepared to monitor patient progress and medications between visits with a specialist and provide referrals as needed.
In addition to the PCP, the local care team might include many other specialists who can play an important role in care, including:
- physical therapists
- speech therapists
Patients should talk to both their PCP and their Niemann-Pick specialist about the different other medical experts they might need as part of a care team. From there, a PCP might be best positioned to help identify specialists in the area who might be a good fit. Once again, it can be helpful to provide every member of a local care team with information about Niemann-Pick disease and the patient’s full medical history. At NNPDF our Family Resources page offers information that can be easily shared with any member of a medical team.
In any community, you might start a search for a PCP or other specialists by asking friends and family members for a referral. If you need assistance finding a physician, there are also several helpful online websites including ZocDoc, MediFind, and Vitals that can help identify doctors in your area.
NNPDF also often works with patients and caregivers to help identify medical experts who are available to work with patients at every step of their Niemann-Pick journey. Our experts are available to provide guidance and access to resources that can help you find local physicians and materials and strategies that can help make sure that your team is able to provide you with the very best support possible. For more information or if you have any questions, please reach out to us at firstname.lastname@example.org.