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TO EDUCATE THE PUBLIC ON BATTEN DISEASE, PROVIDE EMOTIONAL SUPPORT TO FAMILIES OF CHILDREN WITH THE DISEASE AND PROVIDE FUNDING FOR CRITICAL RESEARCH IN THE TREATMENT AND CURE OF BATTEN DISEASE

Rare Disease Renegades seeks to ensure long, healthy, happy lives for children with rare diseases throughout the United States through funding of research for cutting edge therapies and life-changing technologies.

To advocate for and enhance our membership's ability to improve the quality of health, life and services for individuals, families and communities affected by sickle cell disease and related conditions, while promoting the search for a cure for all people in the world with sickle cell disease.

The Batten Disease Support and Research Association (BDSRA) is the largest nonprofit organization in North America dedicated to funding research, advancing education, providing family support services, and raising awareness of the disease and its impact. Founded in 1987, the focus of BDSRA is to help unravel the mysteries of Batten disease by bringing the worlds of science, research, and health care together toward a common goal: the discovery of treatments and cures. Programs and services are designed to connect Batten families with resources and specialized care, build networks for optimal care for patients, educate health professionals and the public about the disease, and assist families in managing the emotional, financial, and medical requirements of those affected. BDSRA's research program is a peer-reviewed grant process that focuses on cutting edge technologies and both applied and basic research, including gene therapy, enzyme replacement, and drug discovery. BDSRA also builds alliances and networks across state and federal legislative channels to raise awareness. By educating policymakers and government leaders, BDSRA adds a unified voice to advocate for research funding. As a rare, fatal, inherited disorder of the nervous system, Batten disease has no known treatment or cure. As a lysosomal storage disorder caused by genetic mutations, Batten disease primarily affects the nervous system. The disease occurs in approximately 2-4 births per 100,000 in the U.S. Early symptoms appear in childhood. There are U.S. Chapters of BDSRA in many regions across the U.S. and Canada, as well as global affiliates in Europe, South America, and Asia. All forms of Batten disease result in a shortened life span, and those diagnosed have extensive needs for comprehensive medical care. As a rare disease, Batten is severely underfunded in research and scientific studies.

The Kellner Family Pediatric Liver Disease was founded 10 years ago, shortly after Raphael, the son of Samantha and Andrew Kellner, underwent a life-sustaining liver transplant. Ever mindful of the tragedy that they were fortunate to avoid and set on helping other families who were faced with the same trying circumstances, the Foundation was established. The mission of the Foundation is to reduce the incidence of pediatric liver disease through research, awareness and education, provide resources to families who are affected by pediatric liver disease and to promote awareness of organ donation.

Kidney Disease Research & Assistance Fund knows that our strength lies not only in the words we stand by, but most importantly through the actions of our initiatives. Our Non-Profit Organization realized that by working together we could overcome our challenges much more efficiently, and that is why we ultimately decided to launch Kidney Disease Research & Assistance Fund.

We are a Manx registered Charity (established in 1989) and help support those suffering from Parkinson's disease and their carers living on the Isle of Man. We have monthly drop-in days, can provide patients with care phones, specialist chairs & beds etc all in the hope that they can remain as independent as possible for as long as possible. We offer friendship and care.

The mission of ADAKC is to improve the lives of Kern County Residents affected by Alzheimer's disease and related disorders. ADAKC takes deliberate actions aligned with its vision, that all in Kern County on the Alzheimer's journey have the help and support they need. ADAKC is steadfast in upholding its values: treating everyone with the compassion, dignity and respect of a family member and doing the right thing regardless of the situation. ADAKC’s focus is on caring for the whole-person (mind, body, and spirit) and improving quality of life. To accomplish this, ADAKC strives to remove barriers, identify and resolve unmet health needs, and engage the entire care team.

To advocate for people affected by sickle cell conditions and empower community-based organizations to maximize quality of life and raise public consciousness while advancing the search for a universal cure.

Our mission is to reduce health disparities in minority communities with our unique approach to patient care and community involvement. In minority communities, many patients often don’t seek care or clash with the current system because of cultural differences. We work to integrate patients on the fringe of the healthcare system through culturally sensitive health literacy campaigns, community-based health screenings and our culturally conscious health education television program. It is only through partnership with the communities in which we serve that true transformation will occur and disparities can be reduced. We believe that it is possible for everyone to obtain the same quality care and our mission is centered on making this goal a reality."

As part of a national federation of provincially-based Trusts working together with people from all corners of our nation the National Trust for Land and Culture (BC) protects and cares for our natural and cultural heritage on behalf of all future generations.

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