Hermanowski Family Foundation Initial Request Form<\/p>\n
Organization Name: National Organization for Rare Disorders, Inc.
\nLegal Name (if Different):
\nAlso Known As: NORD
\nMailing Address: 1900 Crown Colony Drive, Suite 310
\nCity: Quincy
\nState: MA
\nPostal Code: 02169
\nMain Phone: 4752750095
\nMain Fax:
\nOrganization Website:
\nEmployer ID Number:
\nOrganization Tax Status: National Organization for Rare Disorders, Inc.<\/p>\n
Proposal Information<\/p>\n
Today’s Date: 7\/25\/2025
\nRequested Amount: 10000<\/p>\n
Project Title: RareCare Companion: Pediatric and Adolescent Support Module
\nProject Description:<\/p>\n
The National Organization for Rare Disorders (NORD) is developing the RareCare Companion, an innovative digital and printable toolkit designed to support children and families navigating the challenges of a rare disease diagnosis. With over 10,000 known rare diseases, most with limited research, few treatment options, and fragmented information, families, especially those with children, are often left overwhelmed, isolated, and uncertain about the next steps in their care journey. <\/p>\n
The RareCare Companion directly aligns with the Hermanowski Foundation\u2019s mission to enhance health, welfare, and education for children up to age 21. This resource includes expert-created content tailored to the unique needs of children and adolescents, including pediatric care navigation, support for transitions from pediatric to adult healthcare, emotional and mental well-being resources, and caregiver guidance. It also provides age-appropriate educational materials designed to help families, teachers, and healthcare providers better understand and manage rare disease challenges, ensuring young patients are supported in all aspects of their lives at home, in school, and in clinical care settings. <\/p>\n
By offering step-by-step care navigation tools, guidance on insurance and financial assistance, and short educational videos featuring healthcare professionals and patient families, the RareCare Companion serves as both a healthcare intervention and an educational outreach tool. It empowers families to make informed care decisions, reduces the emotional burden of isolation, and strengthens children\u2019s overall health and resilience. <\/p>\n
A $10,000 grant from the Hermanowski Foundation would fund a dedicated module focusing on pediatric and adolescent needs, including the production of educational videos featuring physicians, social workers, and patient families. These videos will address topics such as understanding a diagnosis, advocating for care, and managing emotional challenges, complementing the toolkit\u2019s resources and ensuring children receive the guidance they deserve. <\/p>\n
Total Project Budget: 500000<\/p>\n
Other Funding
\nSources For The Project (Committed & Potential): NORD is actively securing diverse funding to bring the RareCare Companion to life. We are pursuing grants from private foundations, corporate partners, and individual donors to cover the full $500,000 project budget. The Hermanowski Foundation\u2019s $10,000 grant would directly support the pediatric and adolescent module, complementing other contributions dedicated to content creation, video production, and outreach efforts.<\/p>\n
Project Duration: 12 months
\nGeographical Area Served: U.S.
\nAge Group To Be Served: 0 – 21 years of age<\/p>\n
Contact Information<\/p>\n
Contact Prefix (Mr,Mrs etc.): Mr.
\nContact First Name: Nick
\nContact Last Name: Schultz
\nContact Title: Senior Grant Writer
\nContact Phone: 4752750095
\nContact Email: nschultz@rarediseases.org<\/p>\n","protected":false},"excerpt":{"rendered":"
Hermanowski Family Foundation Initial Request Form Organization Name: National Organization for Rare Disorders, Inc. Legal Name (if Different): Also Known As: NORD Mailing Address: 1900 Crown Colony Drive, Suite 310 City: Quincy State: MA Postal Code: 02169 Main Phone: 4752750095 Main Fax: Organization Website: Employer ID Number: Organization Tax Status: National Organization for Rare Disorders, […]<\/p>\n","protected":false},"author":5,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[3],"tags":[],"class_list":["post-8559","post","type-post","status-publish","format-standard","hentry","category-grants"],"_links":{"self":[{"href":"http:\/\/hermanowskifoundation.org\/members\/index.php?rest_route=\/wp\/v2\/posts\/8559","targetHints":{"allow":["GET"]}}],"collection":[{"href":"http:\/\/hermanowskifoundation.org\/members\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"http:\/\/hermanowskifoundation.org\/members\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"http:\/\/hermanowskifoundation.org\/members\/index.php?rest_route=\/wp\/v2\/users\/5"}],"replies":[{"embeddable":true,"href":"http:\/\/hermanowskifoundation.org\/members\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=8559"}],"version-history":[{"count":1,"href":"http:\/\/hermanowskifoundation.org\/members\/index.php?rest_route=\/wp\/v2\/posts\/8559\/revisions"}],"predecessor-version":[{"id":8560,"href":"http:\/\/hermanowskifoundation.org\/members\/index.php?rest_route=\/wp\/v2\/posts\/8559\/revisions\/8560"}],"wp:attachment":[{"href":"http:\/\/hermanowskifoundation.org\/members\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=8559"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"http:\/\/hermanowskifoundation.org\/members\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=8559"},{"taxonomy":"post_tag","embeddable":true,"href":"http:\/\/hermanowskifoundation.org\/members\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=8559"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}