! The National Child Traumatic Stress Network
Website: https://www.nctsn.org
Description: Guidance and resources to support and navigate stress and trauma, find treatments and include a course on child and family stress intervention
THIS IS NOT AN EXHAUSTIVE LIST
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Wear Stripes on 2-28-2025
Affecting fewer than 200,000 people in US
7,000 identifiable rare disorders, including 500 types of rare cancers
Resulting in premature deaths
APS Type 1 Foundation
Website: https://apstype1.org
Description: Drives awareness, education and groundbreaking research for APS Type 1.
Cure GM1 Foundation
Website: https://www.curegm1.org
Description: Funds research, advocacy and drug development for GMI - gangliosidosis rare disorder
Charge Syndrome Foundation
Website: https://www.chargesyndrome.org
Description: More information about genetic mutation CHD7
Dup15q Alliance
Website: https://dup15q.org
Description: An extra copy of a portion of chromosome 15 in the 11.2 – 13.1 region which includes symptoms of hypotonia, motor delays, intellectual disability, autism spectrum disorder (ASD), and epilepsy, including infantile spasms.
Emily Ann Griffin Foundation
Website: www.eagf.org
Description: Touches the lives of families who are not able to afford the costly medical equipment often prescribed to support and enhance a child’s life. This foundation explores funding to keep kids on the move, accessible, safe, communicating, extra support while sitting, healthy and happy.
Eurodois
Website: https://www.eurordis.org
Description: Improving the quality of life for people living with rare diseases
EWE Foundation (Edwards Syndrome)
Website: https://theewefoundation.org
Description: Resources and support to families impacted by Trisomy 18 (Edwards Syndrome), and other rare diseases
The Global Foundation for Peroxisomal Disorder
Website: https://thegfpd.org
Description: Funding research, scientific collaboration, and empowerment through educational programs and support services for Peroxisomal Disorders
Issac Foundation
Website: https://www.theisaacfoundation.com
Description: Support and advocacy for patients and families coping with rare diseases
The Mighty
Website: https://themighty.com
Description: Helping people with health challenges better manage their conditions
Mast Cell Aware
Website: https://www.mastcellaware.com
Description: Related information with regards to allergies, anaphylaxis, arthritis, asthma, autism, autoimmune, brain fog, cancer, cardiovascular disease, complex pain syndrome, diabetes,dysautomia/pots, Ehler-Danlos Syndrome, Fibromyalgia, Interstital Cystitis, Hives, Inflammation, Kidney Disease, Lyme Disease, Mastocytosis, Migraines, Mitochondrial Disease, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Multiple Sclerosis, Obseity & Inflammation, Other, Pediatric Mast Cell Disorders, Psoriasis, Rosacea
M4RD.org
Website: https://www.m4rd.org
Description: Medics4RareDiseases and Rare Disorders
Myocarditis Foundation:
Description: Inflammation and damage to the heart, includes a downloadable guide.
National Organization for Rare Disorders (NORD)
Website: https://rarediseases.org
Description: Identification, treatment, and finding cures of rare disorders through programs of education, advocacy, research and patient services. Sponsors the Living Rare Live Longer patient and family forum.
Pediatric Retinal Research Foundation
Website: https://www.prrf.org
Description: Funding research in the quest for a cure for children with blinding, retinal diseases (PFVs, ROP, Norrie Disease, Coats’ Disease, CCLRS, FEVR/Other)
Rare Diseases International
Description: Global alliance across all rare diseases
RareX
Website: https://rare-x.org
Description: Researching global genes, to accelerate treatments for rare disease.
Shraban-Deardorff Syndrome Foundation
Website: https://www.skdeas.org
Description: Identified in 2004, Skraban-Deardorff Syndrome, also known as WDR26-Related Intellectual Disability, is a rare genetic disorder characterized by developmental delay, intellectual disability, seizures and subtle facial differences. Every gene has two copies, and only one copy of the WDR26 gene works properly.
Sturge-Weber Foundation (SWF)
Website: https://sturge-weber.org
Description: To improve the quality of life and care for people with Sturge-Weber syndrome and associated Port-Wine Birthmark conditions through collaboration, education, advocacy, research, and friendly support.
United For Scleroderma Foundation
Website: https://unitedforscleroderma.org
Description: A rare auto immune disease that affects connective tissue and the vascular system. It causes chronic hardening and tightening of the skin and requires a medical diagnosis. While it commonly occurs between the ages of 30 and 50, pediatric form can occur
We Wear Stripes
Website: https://wewearstripes.com
Description: Information about rare disease day a social media campaign and find the filter mosaic zebra
Hello, Liver Pencil Almost Purple is Dog - Americorp *Vista Volunteer, 2000
American Library Association
Website: Www.ala.org
Description: The purpose of ALA is to promote library service and librarianship.” The stated mission is, “To provide leadership for the development, promotion, and improvement of library and information services and the profession of librarianship in order to enhance learning and ensure access to information for all.”
Badges and Books
Description: Partner with law enforcement to provide books to schools and organizations to help spread awareness of the importance of honoring our fallen heroes and their families.
Books for Africa
Website: https://www.booksforafrica.org
Gathers, sorts, ships, and distributes books to children across Africa.
HalfPrice Books
Website: https://hpb.com
Description: Donates boxes of books they are taking off the shelves to teachers, need a school ID and tax letter.
Reading is Fundamental
Website: https://www.rif.org
Description: Partners with book publishers, volunteers, community groups, & organizations, RIF believes that every child deserves an opportunity to own books, learn how to read
$Funding: Grant programs - Books for Ownership, Read for Success or Skybrary
Silver Stories
Website: https://silverstories.co.uk
Description: Children (known as Silver Readers) telephone a Silver Listener every week and then read a short story or poem to them.
Carson Scholars Organization - Scholarships for reading rooms (scholarships and reading rooms)
Hello, Liver Pencil Almost Purple is Dog - Americorp *Vista Volunteer, 2000
! The National Child Traumatic Stress Network
Website: https://www.nctsn.org
Description: Guidance and resources to support and navigate stress and trauma, find treatments and include a course on child and family stress intervention
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211: a referral database to locate local programs
Housing and Urban Development (HUD) and Housing Choice Voucher Program (section 8)
Website: https://www.hud.gov
Description: Meet guidelines, each county has a HUD office specializing in public housing, meet low-income guidelines, pay about 30% of income, help with security deposits
Salvation Army
Website: https://www.salvationarmyusa.org
Description: Holiday giveaway, Rent and Utility Assistance, Homeless Shelters, Rehabilitation, Disaster Relief, Job Training, Summer Camps, Services for the Aging, Life Skills to Escape Poverty, Grassroots Services, Services to all, Responses to Human Trafficking, Spiritual and Worship Services, Veteran Services
THIS IS NOT AN EXHAUSTIVE LIST
CONNECT TO SHARE RESOURCES