Patient Resources

Resources for Patients and Advocates in NC

https://rarediseases.info.nih.gov/guides/pages/96/patients-families-and-friends

https://globalgenes.org/

http://everylifefoundation.org/

http://www.BabysFirstTest.org

http://www.raredr.com/

http://joyfuljourneymom.com/ultimate-list-of-grants-and-resources-for-families-with-special-needs/

http://www.fishstrong.org/?page_id=25

Research and Advocacy 

Genetic Alliance 

www.GeneticAlliance.org

Genetic Alliance is devoted to promoting optimum health care for people suffering from genetic disorders. 

RareConnect

www.rareconnect.org

RareConnect promotes global conversation and collaboration to improve the lives of rare disease patients and assist the organizations that serve them. 

Global Genes

www.globalgenes.org

Global Genes serves to build awareness, educate the global community, and provide critical connections and resources that equip advocates to become activists for their disease.

EveryLife Foundation

www.everylifefoundation.org

The EveryLife Foundation for Rare Diseases is dedicated to accelerating biotech innovation for rare disease treatments through science-driven public policy.

National Organization for Rare Disorders (NORD)

www.rarediseases.org

NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them.  NORD, along with its more than 250 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.

National Institutes of Health

www.nih.gov

NIH’s mission is to seek fundamental knowledge about the nature and behavior of living systems and the application of that knowledge to enhance health, lengthen life, and reduce illness and disability.

NIH is made up of 27 Institutes and Centers, each with a specific research agenda, often focusing on particular diseases or body systems.  Of particular interest to the rare disease community:

Office of Rare Disease Research (ORDR)/National Institutes of Health (NIH)

www.rarediseases.info.nih.gov

The Office of Rare Diseases Research (ORDR) was established in 1993 within the Office of the Director of the National Institutes of Health (NIH), the Federal focal point for health research. ORDR coordinates and supports rare diseases research, responds to research opportunities for rare diseases, and provides information on rare diseases.

Genetic and Rare Diseases Information Center (GARD)/NIH

www.rarediseases.info.nih.gov

A collaborative effort of ORDR and the National Human Genome Research Institute (NHGRI), the Genetic and Rare Diseases Information Center (GARD) is a program of the National Center for Advancing Translational Sciences (NCATS) at the NIH.  GARD provides the public with access to current, reliable, and easy-to-understand information about rare or genetic diseases in English or Spanish.

National Human Genome Research Institute (NHGRI)/NIH

www.genome.gov

NHGRI supports the development of resources and technology that will accelerate genome research and its application to human health. A critical part of the NHGRI mission continues to be the study of the ethical, legal and social implications (ELSI) of genome research. NHGRI also supports the training of investigators and the dissemination of genome information to the public and to health professionals.

Organizations for Undiagnosed or Unnamed Syndromes

Syndromes Without A Name USA (SWAN USA)

www.swanusa.org

SWAN USA advocates for children and young adults who have syndromes without a name.  They also offer support, advice and information on the challenges that families face when there is no diagnosis.

Rare & Undiagnosed Network (RUN)

www.rareundiagnosed.org

Raise awareness for families with children afflicted with undiagnosed or rare diagnosed conditions. Urge insurance companies to reimburse genome sequencing in clinical settings. Network with researchers, insurance providers, and industry stakeholders to meet these families’ needs.

Undiagnosed Diseases Network (UDN)

www.genome.gov

The Undiagnosed Diseases Network, funded through NIH Common Fund, is designed to accelerate discovery and innovation in the way we diagnose and treat patients with previously undiagnosed diseases.

In Need of Diagnosis (INOD)

www.inod.org 

Serves as a resource center for those who suffer with illnesses that have eluded diagnosis. INOD does not diagnose but it is sometimes possible to identify unexplored options that may lead to help. INOD advocates for increased accuracy and timeliness in diagnosis and for the development of a medical specialty in diagnosis.

Caregivers – Support and Advocacy

The Caregiver Action Network (CAN)

www.rarecaregivers.org

The mission of the Caregiver Action Network (CAN) is to promote resourcefulness and respect for the more than 90 million family caregivers across the country.  The site includes specific guides for family caregivers of loved ones with rare diseases and links to rare disease patient organizations.

Family Voices

www.familyvoices.org

Family Voices aims to achieve family-centered care for all children and youth with special health care needs and/or disabilities.

Through a national grassroots network, Family Voices provide families resources and support to make informed decisions, advocate for improved public and private policies, build partnerships among families and professionals, and serve as a trusted resource on health care.

‪Exceptional Children's Assistance Center (ECAC) is the Family Voices State Affiliate Organization and the Family-to-Family Health Information Center in North Carolina.

Family Support Network of North Carolina

www.fsp.unc.edu

The Family Support Network of North Carolina, a program of the University of North Carolina at Chapel Hill School of Medicine, is dedicated to providing information, assistance, support, and resources to families of children with special needs and professionals who serve these families. The Family Support Network's mission is threefold: to provide current information about disabilities, services, and agencies that serve affected families and professionals; to coordinate a network of community-based parent-to-parent programs to offer support and assistance to other parents, professionals, and agencies; and to encourage parent-professional collaboration between physicians and other health care professionals and affected families.

Patient Assistance Programs

Patient Access Network Foundation (PAN)

www.panfoundation.org

The Patient Access Network Foundation is dedicated to providing underinsured patients with financial assistance through more than 50 disease-specific funds that provide access to progressive therapies.