PEOPLE LIVING WITH RARE DISEASES
- Accurate Information: Trusted sources to help you understand your condition and explore treatment options.
- Support Networks: Organizations and groups that connect you with others who share similar experiences, fostering community and collaboration.
- Assistance Programs: Financial, medical, and social support initiatives designed to ease the burden of living with a rare disease.
- Advocacy Tools: Ways to amplify your voice and contribute to meaningful policy changes that benefit the rare disease community.
Provides patient assistance programs, disease-specific information, and connections to patient support groups and advocacy resources.
NORD provides programs to assist patients in accessing medications, insurance, and financial aid for treatment-related expenses.
Offers reliable and comprehensive information about rare and genetic diseases, including treatment options and patient support services.
Provides educational resources, toolkits, and support networks for rare disease patients and their families, promoting global advocacy and awareness.
Grief from a rare disease is ongoing, marked by uncertainty and chronic stress, and often deepens our sense of isolation as it differs from the typical grief experienced with the loss of an older loved one.
At Global Genes one of the concerns we hear most often from rare disease parents is how to best understand and support the siblings of the person with a rare disease.
If you were just diagnosed with a rare disease or you are feeling you may remain undiagnosed as you continue to search for answers, you are bound to be wondering what can I do?
A detailed database offering information on rare diseases and orphan drugs, directories of patient organizations, and expert centers.
An online platform where rare disease patients and their families can connect with others, share experiences, and access disease-specific information.
Provides support, advocacy, and information for rare disease patients in Europe, including a network of patient organizations.
Raises awareness and provides resources and tools for patients to participate in advocacy and awareness campaigns globally.
Offers advocacy resources and tools to help patients engage in legislative processes and promote rare disease policies.
A database of privately and publicly funded clinical studies conducted around the world, including those focused on rare diseases.
Provides resources, guidance, and community support for parents caring for children with serious illnesses, including rare diseases.
A digital health community where patients and their families share their experiences and find support and information on various health conditions, including rare diseases.
Offers information on clinical research and resources for patients, including a contact registry for participation in studies
Nevada-Specific Resources for People Living with Rare Diseases
These Nevada-specific resources provide essential support, information, and advocacy opportunities for individuals living with rare diseases and their families, helping them navigate the unique challenges associated with their conditions.
Based in Las Vegas, this foundation provides specialized medical treatment to children with rare diseases, offering comprehensive care, support services, and advocacy for patients and their families.
Offers support services for children diagnosed with life-threatening or rare illnesses, including counseling, financial assistance, educational support, and family activities.
Provides genomic sequencing and research services, aiding in the diagnosis and understanding of genetic and rare diseases.
Offers diagnostic, treatment, and support services for children with autism and other developmental disorders, including rare genetic conditions.
Provides resources, support services, and care coordination for children and youth with special health care needs, including those with rare diseases.
Offers housing and support services to families with children receiving medical treatment for serious or rare conditions in Las Vegas.
A comprehensive resource directory that connects Nevada residents to essential health and human services, including those specific to rare diseases.
Provides support, information, and advocacy for parents of children with disabilities, including rare diseases, helping them navigate the education and healthcare systems.
Grants wishes to children with critical illnesses, including those with rare diseases, offering emotional and psychological support to families.
Provides emotional, educational, and financial support to children diagnosed with cancer and their families, addressing the needs of those affected by rare childhood cancers.
Supports families caring for children with rare, life-limiting, or complex medical conditions by providing financial assistance, equipment, and family-centered events and support.
Provides educational services to students who are unable to attend school due to medical conditions, ensuring they continue their education while receiving treatment.