Helpful Organizations
Finding the right help should not be another burden
Families affected by RNU2-2 often find themselves navigating unfamiliar medical systems, therapies, schools, disability services, insurance requirements, and financial-assistance programs—all while caring for someone with complex needs.
The resources below can help you locate reliable information, understand available services, prepare for conversations with professionals, and identify organizations that may be able to assist.
Resources vary by country, state, region, eligibility, and availability. If you are unsure where to begin, please contact ReNU2 Foundation. We may not have every answer, but we will help point you in the right direction.
Rare-Disease Information and Navigation
Genetic and Rare Diseases Information Center
The National Institutes of Health’s Genetic and Rare Diseases Information Center, known as GARD, provides free, understandable information about rare and genetic conditions, research, specialists, and available resources in English and Spanish.
Visit GARD
Link: rarediseases.info.nih.gov
National Organization for Rare Disorders
NORD provides rare-disease information, patient resources, advocacy guidance, and financial-assistance programs for eligible individuals and families in the United States. Assistance may include support with medications, insurance costs, diagnostic testing, or travel for clinical care and research.
Explore NORD Resources
Link: rarediseases.org
EURORDIS—Rare Diseases Europe
EURORDIS connects and advocates for people living with rare diseases across Europe. Its website includes information about patient organizations, European rare-disease initiatives, policy, research, and opportunities for families to become involved.
Visit EURORDIS
Link: eurordis.org
Orphanet
Orphanet is an international resource offering information about rare diseases, specialized services, research, registries, clinical trials, and patient organizations in numerous countries.
Search Orphanet
Link: orpha.net
Epilepsy and Neurological Support
Many people with RNU2-2 experience seizures. Every person’s epilepsy is different, and treatment decisions should always be made with the individual’s medical team.
Epilepsy Foundation
The Epilepsy Foundation provides information about seizure types, treatment, safety, medication, school planning, seizure action plans, and local epilepsy services.
Its Epilepsy and Seizures Helpline connects families with trained information specialists:
English: 1-800-332-1000
Spanish: 1-866-748-8008
Visit the Epilepsy Foundation
Link: epilepsy.com
Seizure Recognition and First Aid
The Epilepsy Foundation offers clear guidance and training materials explaining how to recognize different types of seizures, provide basic seizure first aid, and identify when emergency help is needed.
Learn Seizure First Aid
Link: Seizure First Aid Resources
Child Neurology Foundation
The Child Neurology Foundation provides educational tools and navigation resources for families of children living with neurological conditions.
Explore Child Neurology Resources
Link: childneurologyfoundation.org
Navigating Healthcare and Disability Services
Family Voices
Family Voices and its Family-to-Family Health Information Centers help families of children with disabilities and complex medical needs understand healthcare systems, insurance, services, and family rights. Families in the United States can search for an organization serving their state or territory.
Find Help in Your State
Link: familyvoices.org/findhelp
Supplemental Security Income
In the United States, some children and adults with qualifying disabilities may be eligible for Supplemental Security Income, commonly called SSI. Eligibility includes financial and disability requirements and is determined individually by the Social Security Administration.
Learn About SSI
Link: ssa.gov/ssi
Educational Advocacy and School Support
Parent Training and Information Centers
Every U.S. state has at least one federally supported Parent Training and Information Center. These centers help families understand special-education rights, evaluations, Individualized Education Programs, dispute-resolution options, and available community services.
Find Your Parent Center
Link: parentcenterhub.org/find-your-center
Financial Assistance
Medical care, therapies, equipment, transportation, and other disability-related expenses can place substantial pressure on families.
NORD maintains financial-assistance programs for certain diagnoses and needs. Programs have specific eligibility requirements and may open, close, or change according to available funding.
Button: Search NORD Assistance Programs
Link: NORD Patient Assistance Programs
Cannot Find What You Need?
Because RNU2-2 is newly recognized, families may encounter professionals and agencies that are unfamiliar with the diagnosis. You do not need to have everything figured out before reaching out.
Tell us what type of information or support you are looking for. We will share any relevant ReNU2 resources we have and, when possible, direct you toward an organization that may be able to help.
The resources listed on this page are provided for general informational purposes. ReNU2 Foundation does not provide medical, legal, financial, or educational advice and cannot guarantee eligibility for, availability of, or outcomes from any outside program. Inclusion does not constitute endorsement of every service or statement offered by an outside organization.
