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  • SCID - A Family's Journey through Isolation

    4,843 views 1 year ago
    Severe Combined Immune Deficiency (SCID), also known as the bubble boy disease, is a rare, serious disorder where a child lacks the ability to fight off infections. Babies with SCID are placed in isolation both before and after the corrective treatment to protect them, or isolate them from germs that could make them sick.

    Riley’s parents share their perspective on her diagnosis, treatment and isolation. Her story of survival is one of many. Fortunately many children with SCID are now grown, living healthy, productive lives. SCID can affect any infant, regardless of gender, race, ethnicity or socioeconomic status. Without appropriate early treatment, including the critical period of isolation, these babies cannot survive. Therefore it is essential that newborn screening for SCID is established in all 50 states because all babies, no matter where they are born, deserve a healthy life.

    For more information, go to: www.primaryimmune.org/scid Show less
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    • IDF Young Adult Advocating for Change: Part Two – This Is Just Your Prologue - Duration: 3 minutes, 12 seconds.

      • 7 months ago
      • 707 views
      Maddie, a young IDF Advocate and Volunteer, shares her unique perspective on what motivated her to become an active advocate for the PI community and what life experiences contributed to the develo...
    • Working Collaboratively With Your Healthcare Providers - Duration: 3 minutes, 23 seconds.

      • 7 months ago
      • 49 views
      Many patients and families with primary immunodeficiency struggle to navigate the myriad of issues associated with insurance denials and obtaining access to the medications they need. M. Elizabeth ...
    • IDF Young Adult Advocating for Change: Part One - The Power of a Young Voice - Duration: 5 minutes, 47 seconds.

      • 8 months ago
      • 412 views
      Bryan, a Young IDF Advocate and Volunteer, discusses the importance of advocating on behalf of the primary immunodeficiency (PI) community at the state and federal level.
    • IDF’s Grassroots Campaign: SCID Rally in New Orleans, Louisiana - Duration: 5 minutes, 23 seconds.

      • 1 year ago
      • 96 views
      The Immune Deficiency Foundation (IDF) hosted a SCID Rally in New Orleans on Thursday, June 25 to urge government officials in Louisiana to bring back newborn screening for SCID to the state.
    • SCID - A Family's Journey through Isolation - Duration: 9 minutes, 25 seconds.

      • 1 year ago
      • 4,843 views
      Severe Combined Immune Deficiency (SCID), also known as the bubble boy disease, is a rare, serious disorder where a child lacks the ability to fight off infections. Babies with SCID are placed in i...
    • ADVOCATE - Teen Volunteer Inspires Primary Immunodeficiency Community - Duration: 82 seconds.

      • 1 year ago
      • 234 views
      Maddie, a teen vounteer for the Immune Deficiency Foundation (IDF), created this inspiring, short video based on her experiences advocating for patients with primary immunodeficiency on Capitol Hil...
    • Restrictive Immunoglobulin Formularies Hurt Patients - Duration: 4 minutes, 46 seconds.

      • 2 years ago
      • 431 views
      Heather details how a health insurer's restrictive formulary for her lifesaving immunoglobulin therapy impacted her health and ultimately her entire life.
    • Carolyn supports the Patients' Access to Treatments Act - Duration: 5 minutes, 43 seconds.

      • 2 years ago
      • 610 views
      Carolyn details her struggles with coinsurance for her lifesaving immunoglobulin therapy, which amount to thousands of dollars in out of pocket costs per month. HR 460, the Patients' Access to Trea...
    • Shopping in the Health Insurance Marketplaces - Duration: 6 minutes, 45 seconds.

      • 2 years ago
      • 105 views
      Marian, a patient with Common Variable Immune Deficiency, details her experience shopping for a health plan in the health insurance marketplace. She gives tips for patients with primary immunodefic...
    • Be Your Own Healthcare Advocate - Duration: 2 minutes, 28 seconds.

      • 2 years ago
      • 251 views
      Randi was faced with an inappropriate health insurance denial. She decided to stand up and advocate for herself.
    • SCID Newborn Screening in California - Duration: 5 minutes, 29 seconds.

      • 2 years ago
      • 1,184 views
      Annalou's family talks about how newborn screening for Severe Combined Immune Deficiency (SCID) in California changed their lives and how important it is to have SCID newborn screening in all 50 st...
    • Meeting with your Elected Officials - Duration: 9 minutes, 56 seconds.

      • 3 years ago
      • 79 views
      Immune Deficiency Foundation volunteer, Catherine, describes preparing for and conducting a meeting with your elected officials. She is joined by Congressman Van Hollen in detailing how important ...
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