The following is a list of resources that we have come across in our long journey with PIDD. Some of these are local to Massachusetts, and some may be national. We hope you find them useful!
Immune Deficiency Foundation
The national organization dedicated to research, education and advocacy for Primary Immune Deficiency Diseases. A first stop for anyone affected by PIDD.
Info4PI - Jeffrey Modell Foundation
JMF is dedicated to creating public awareness about PIDD.
A great place to learn more.
Patient Notification System
Sign up to be notified of safety and recall information for patients using IVIG or Subcutaneous Immunoglobulin therapies.
Sign up for your FREE subscription to this wonderful magazine, especially for patients using IVIG or Subcutaneous Immunoglobulin therapies.
Medicaid / MassHealth
This medical assistance program may be available to help you if your child has a medical condition expected to last more than 12 months. It can be a primary insurance, or supplementary to private insurance, often covering co-payments.
In MA this is called MassHealth -- it will have a different name in every state.
SSI - Supplemental Security Income
Based on your child's clinical condition and your income,
you may qualify for help.
PedPID Yahoo Group
A great place to meet other parents of children with PIDD across the US.
Perfect for asking questions of those who truly understand.
IDF Discussion Forum
A place to meet patients and parents of children with PIDD across the US.
Children's Hospital Boston
Find an Immunologist in Boston.
NEPIN (New England Primary Immune Network
Works in conjunction with JMF and IDF to support families living with PIDD through research and annual KID's Days.
American Red Cross
International organization dedicated to keeping adequate blood supply available.
Academy of Allergy, Asthma & Immunology AAAAI
A good place for information on PIDD.
Neutropenia Support Association
A good place to learn about neutropenia, often a component of PIDD.
Department of Public Health Care Coordination
Having a DPH Care Coordinator can be instrumental in helping families
find programs, services and resources that can meet a child and family's
MassSTART (sponsored by DPH)
A free collaborative service that helps families and schools in MA plan for the health care and safety of children and adolescents with special health needs.
504 Plan Information
An excellent resource if you need a 504 Eduational Plan for your child.