The NH Rare Disorders Association is a 501(c)(3) nonprofit organization working to ensure high quality medical care and a high quality of life for NH residents living with rare diseases. This organization supports NH residents with rare conditions through sustained, collaborative activities to:
♦ Expand community awareness
♦ Advance scientific research
♦ Improve medical care
♦ Inform legislative policy
♦ Provide patient resources
CLOVES Syndrome Community supports, educates, empowers and improves the lives of those affected by CLOVES Syndrome. The CLOVES Syndrome Community (CSC) Family Assistance Program provides financial relief to families impacted by CLOVES Syndrome. Their mission with the CSC Family Assistance program is to alleviate some of the costs associated with medical care, medical-related travel, and other CLOVES-related needs.
This genetic disorder has three forms: NF1, NF2, and Schwannomatosis. NF1 affects 1 in 3,000 births and causes tumors to grow anywhere in the body, including the brain and spine and can cause a series of other significant health issues. They range from serious skeletal abnormalities to cardiovascular issues to difficult-to-treat cancers. Much is still not understood. The Littlest Tumor Foundation Increase understanding of Neurofibromatosis (NF), empower affected families, advance research of preventative therapies.
Rare New England’s mission is to bring together New England patients, families and providers touched by rare and complex disorders. They offer educational opportunities, create awareness of available resources, and build foundations for support to improve patient quality of life. This organization offers patient and family support, highlights NE region’s medical and community resources, connects patients to appropriate national support and advocacy groups, and creates educational opportunities for New England patients and providers to advance care and quality of life for rare disorder patients and their families.
The CdLS Foundation provides a host of services that educate and unite families touched by this little-known genetic syndrome.
Teachers and parents use GEMSS to better understand the needs of students who have genetic conditions. If you support a child just beginning his or her educational journey, GEMSS was created for you! Includes genetic conditions such as 22q Deletion Syndrome, Down Syndrome, Fragile X, MCAD, PKU, Sickle Cell Disease, VLCAD, and Williams Syndrome, with more conditions being added. GEMSS will help you provide the best education and most meaningful supports for these children.
GEMSS identifies six important areas of school life to address:
♦ Medical / Dietary Needs
♦ Education Supports
♦ Behavior & Sensory Supports
♦ Physical Activity,Trips,Events
♦ School Absences & Fatigue
♦ Emergency Planning
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The mission of the New England Regional Genetics Network (NERGN) is to promote and improve health and social well-being of those with inherited conditions through collaborations among
public health professionals, private health professionals, educators, consumers and advocates in Maine, New Hampshire, Vermont, Massachusetts, Rhode Island and Connecticut.
The purpose of the Regional Genetics Networks (RGNs) is to: 1) link medically underserved populations (based on poverty, rural geographic location, and/or populations that experience health disparities)1 to genetic services; 2) implement quality improvement activities to increase the connection with genetic services for the medically underserved; 3) implement evidence-based innovative models of telehealth and/or telemedicine with a focus on clinical genetics outreach; and 4) provide resources to genetic service providers, public health officials and families.
This network includes more than 1,200 disease-specific advocacy organizations, as well as thousands of universities, private companies, government agencies, and public policy organizations. The network is a dynamic and growing open space for shared resources, creative tools, and innovative programs. Are you looking for disease information or support? A comprehensive database will help you locate more than 13,000 conditions and thousands of support groups and foundations.
The Autoinflammatory Alliance is a 501 (c)(3) non-profit public charity dedicated to promoting awareness, proper diagnosis and treatment, and improved care for people with autoinflammatory diseases.
There are many autoinflammatory diseases with symptoms that are present from childhood or infancy. Some refer to these diseases as periodic fever syndromes. A few develop symptoms in adulthood, or late childhood. Autoinflammatory diseases are caused by genetic mutations that are either inherited, or occur spontaneously at conception.
Resource include information on conditions such as Familial Cold Autoinflammatory Syndrome (FCAS), Muckle-Wells Syndrome (MWS), Neonatal-Onset Multisystem Inflammatory Disease (NOMID) and more.
Genes in Life is a place to learn about all the ways genetics is a part of your life. On this site you will learn how genetics affects you and your family, why you should talk to your healthcare providers about genetics, how to get involved in genetics research, and much more!