|
Topic |
Description |
Resource |
| General Information on California Newborn Screening | Parent Fact Sheet | https://www.cdph.ca.gov/Programs/CFH/DGDS/CDPH%20Document%20Library/NBS%20Documents/Info-for-Parents-About-Newborn-Screening-Test.pdf |
| Provider Fact Sheet | https://www.cdph.ca.gov/Programs/CFH/DGDS/CDPH%20Document%20Library/NBS%20Documents/SCID_Provider_Fact_Sheet.pdf | |
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Genetic Counseling/Family Planning |
SCID Compass Family Planning Guide:Thinking About the Future guide (Pg. 23-24) |
https://primaryimmune.org/sites/default/files/publications/SC ID_Compass_Toolkit.pdf |
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Genetic Counseling SCID Compass Series Podcast |
https://soundcloud.com/haveyouherdanidfpodcast/genetic-counseling-part-of-the-scid-compass-series?utm_source=clipboard&utm_campaign=wtshare&utm_ medium=widget&utm_content=https%253A%252F%252Fsoun dcloud.com%252Fhaveyouherdanidfpodcast%252Fgenetic-counseling-part-of-the-scid-compass-series |
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How to inform family/friends/employers/my child about SCID |
Immune Deficiency Foundation transition of care workbook (Pg. 15-19) |
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How to talk about SCID with my child |
The book: Understanding Your Immune System and Primary Immunodeficiencies By Roshini Sarah Abraham Children’s book on general immune deficiencies |
https://primaryimmune.org/sites/default/files/publications/IDF-Our-Immune-System-2015_1.pdf |
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Research opportunities |
SCID Angels For Life Foundation: Clinical Trials for SCID |
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Immune Deficiency Foundation Podcast: Clinical Research Trials & You |
https://soundcloud.com/haveyouherdanidfpodcast/clinical-research-trials-you?utm_source=clipboard&utm_campaign=wtshare&utm_m edium=widget&utm_content=https%253A%252F%252Fsoundc loud.com%252Fhaveyouherdanidfpodcast%252Fclinical-research-trials-you |
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U.S. National Library of Medicine Most updated information on clinical trials |
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Rare Diseases Network Community Resources Research, registry, undiagnosed diseases |
https://www.rarediseasesnetwork.org/resources-for-patients-and-families |
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School-based support programs Early Intervention: services such as speech therapy, occupational therapy, and physical therapy. The school district where you live may provide early intervention programs for which your child may qualify. These programs - sometimes known as Child Find, Bright Beginnings, or Infant and Toddler Connection - offer resources to help a child who has experienced developmental delays for any reason. School: An IEP is a legal document that is developed for each public school child in the U.S. who needs special education. A 504 Plan requires the school to provide special accommodations to keep your child healthy. |
SCID Compass guide Family Planning: Planning for the Future (Pg. 20-21) |
https://primaryimmune.org/sites/default/files/publications/SC ID_Compass_Toolkit.pdf |
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Disability Rights Education & Defense Fund Education advocacy under “special education” (English and Spanish available) |
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Community Alliance for Special Education CASE - An organization that serves the Bay Area, but contains useful information on special education |
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Center for Parent Information and and Resources (CPIR) CPIR – Central resource of information and products to serve families and children with disabilities |
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Transition of care from pediatric to adult providers |
Immune Deficiency Foundation transition of care workbook Covers transitioning of providers, health insurance, interpersonal relationships, and other resources |
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Immune Deficiency Foundation Young Adult Webinars Developed specifically for young adults to connect with others in the community |
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Mental health resources |
SCID Compass guide: Maintaining mental health (pg. 15) Ask your team for a referral to a mental health professional for individual therapy, marriage counseling, and/or whole family therapy if you have children old enough to participate. Call your insurance company and ask for covered mental health providers in your area. Make sure to ask about what benefits are offered and what services are covered and not covered. |
https://primaryimmune.org/sites/default/files/publications/SC ID_Compass_Toolkit.pdf |
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Transportation |
Medi-Cal Transportation Overview |
https://www.dhcs.ca.gov/services/medi-cal/Pages/Transportation.aspx |
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Food Insecurity |
CalFresh (food stamps) CalFresh is for people with low-income who meet federal income eligibility rules and want to add to their budget to put healthy and nutritious food on the table |
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Other languages |
SCID Compass Dutch French Portuguese Spanish Tagalog |
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SCID Compass Tool kit Arabic French German Hebrew Korean Navajo Portuguese Simplified Chinese Spanish Tagalog (Filipino) Vietnamese |
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SCID Compass Videos & Podcast Spanish |