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National Comprehensive Cancer Network Patient Resources
The National Comprehensive Cancer Network (NCCN) has published clinical guidelines for histiocytic neoplasms. While histiocytosis does not currently have patient guidelines, there are many great resources the NCCN provides. NCCN Guidelines for Patients, NCCN Patient Resource Card, and Questions to Ask About Cancer Care.
Management of AVP-D Patient Card
Right Click–> Save as or Print to print out and keep in your wallet or purse in case of emergency as a resource to share with your doctor. Disclaimer: The points listed on this card are all possible points of care, which your doctor may need to adjust as necessary…
Supporting Diverse Family Caregivers: A Guide For Patient Advocacy Groups
NAC DiverseCaregiversGuidebook
Post-Traumatic Stress Disorder in Rare Caregivers
POST TRAUMATIC STRESS DISORDER FLYER RARE CAREGIVER -PDF Download
Center for Medicare and Medicaid Services
The Center for Medicare and Medicaid Services is a .gov website with resources for those looking to begin or manage Medicare or Medicaid plans. Linked here is a great summary of PDFs, videos and separate webpages they offer, in many different languages.
Medicare.gov
Medicare.gov lists a wide swath of resources for populations based on age, disability and immigrant status in over 2 dozen languages.
Helping Parents Heal
Helping Parents Heal (HPH) is a non-profit organization dedicated to assisting bereaved parents. Through support and resources offered, we aspire to help individuals become “Shining Light Parents”—meaning a shift from a state of emotional heaviness to one of hopefulness and greater peace of mind. HPH goes a step beyond other…
Stress Relief Products for Caregivers from MyCaringPlan
My Caring Plan is a website focused on caregiving that has been featured on PBS. It takes a very special person to dedicate themselves to the care of another. And yet, caregiving is often one of the most stressful jobs, in large part due to the vital importance of the…
Caregiver Resources from MyCaringPlan
My Caring Plan is a website focused on caregiving that has been featured on PBS. As a family caregiver, you may feel it is nearly impossible to take a break. This role often involves an around-the-clock commitment to your loved one, so you may feel you need to be available…