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NORD’s Rare Caregiver Respite program was an absolute lifeline for our family this past year. With the respite program, I was able to select a family friend who I trusted, who was already adequately trained to handle my daughter’s needs, and I could have her provide respite whenever I needed it. The reimbursement process was easy, and payment was received promptly.
Jan 18, 2024 · Learn about Pompe Disease, including symptoms, causes, and treatments. If you or a loved one is affected by this condition, visit NORD to find resources and
Aug 24, 2023 · Learn about Glutaric Aciduria Type I, including symptoms, causes, and treatments. If you or a loved one is affected by this condition, visit NORD to find
May 17, 2023 · Learn about Mosaic Trisomy 9, including symptoms, causes, and treatments. If you or a loved one is affected by this condition, visit NORD to find resources
Mar 5, 2025 · Learn about COL4A1/A2-Related Disorders, including symptoms, causes, and treatments. If you or a loved one is affected by this condition, visit NORD to find
Representatives of patient organizations who are interested in listing an organization in the NORD’s Organizational Database (ODB) may contact NORD.
Aug 25, 2025 · National Organization for Rare Disorders (NORD®) NORD advances practical, meaningful, and enduring change so people with rare diseases can live their fullest and best lives. Every day, we elevate care, advance research, and drive policy in a purposeful and holistic manner to lift up the rare disease community.
Aug 6, 2015 · Learn about PMM2-CDG, including symptoms, causes, and treatments. If you or a loved one is affected by this condition, visit NORD to find resources and support.
NORD is committed to breaking down silos and building bridges so that people living with a rare disease can achieve their best health and well-being. Our belief is that the NORD Rare Disease Centers of Excellence program is the next big stride forward for rare disease patients and care, to improve health equity and create critical new connections to resources and specialists across …
May 19, 2025 · Learn about Sotos Syndrome, including symptoms, causes, and treatments. If you or a loved one is affected by this condition, visit NORD to find resources and
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