Parent Resources For Chromosome Disorders & Rare Diseases

Find Your Parent Center

Nearly 100 Parent Training and Information Centers (PTIs) and Community Parent Resource Centers (CPRCs) exist across the United States (including Puerto Rico).

  • Helping families with children (up to age 26) who have disabilities.
  • Guiding parents in supporting their child’s education and growth. 
  • Teaming up with experts to better help family members with disabilities.

Understanding Assistive Technology (PDF)

Assistive technology (AT) includes any tool, equipment, or software designed to help students with disabilities function better. AT services assist in choosing and using these tools, offering evaluations, coordination, and training for the student and their family, if needed.

Parent to Parent of New York State

Parent to Parent of New York State provides a support network for families caring for individuals with developmental disabilities or special healthcare needs. The organization aims to reduce isolation and help families make informed decisions about services.

  • Support: Connects parents/caregivers with others who’ve faced similar challenges (think for families).
  • Help: Guides families and professionals to the appropriate resources and services.  
  • Training: Offers workshops on various topics for both family and professional groups.

National Organization for Rare Diseases (NORD)

NORD stands as a pioneering nonprofit dedicated to supporting individuals and families affected by rare diseases. It uniquely bridges care, research, policy, and community involvement for all rare conditions.

The Genetic Alliance

Established in 1986, The Genetic Alliance is a pioneering non-profit that integrates advanced technologies with personalized programs. Its primary goal is to reshape health systems, ensuring they meet the genuine health demands of individuals, families, and communities.

Unique: Understanding Rare Chromosome and Gene Disorders (UK)

Since it started in the UK in 1984 by Edna Knight, Unique has been helping people and families affected by rare chromosome disorders. It gives them support, information, and a way to connect with each other.

Self-Organizing Support Groups on Social Media