Resource eBlast March 2019
Sharing Resources for Families of Children with Special Health Care Needs

Greetings!  The January eBlast introduced and shared resources from the National Coordinating Center for the Regional Genetics Network. This month's eBlast is part 2 of our focus on genetics, sharing family resources from each of the seven regional genetics networks across the country. 

The Heartland Collaborative is made up of mighty teams from Arkansas, Iowa, Kansas, Missouri, Nebraska, North Dakota, Oklahoma, and South Dakota working to "ensure the best possible outcomes for individuals with heritable disorders." C onnect with the Heartland Collaborative here.

Check out their resource for families on What is Medical Genetics?  in English and Spanish .

Mountain States Regional Genetics Network (MSRGN) seeks to ensure individuals with genetic disorders and their families have access to quality care and appropriate genetic expertise and information through facilitation of a professional network of genetic clinics, primary care practices, consumers, advocates and state health departments. If you or someone you love lives in Arizona, Colorado, Montana, Nevada, New Mexico, Texas, Utah, and Wyoming, connect with MSRGN  and explore their resources for families.  Navigate the Genetic Clinic Finder to locate a clinic near you.

If you would like to get involved with raising awareness and improving access to genetics services in the Mountain States, consider joining the Genetic Ambassadors Program .

The Midwest Regional Genetics Network views success a person-at-a-time -- assisting one individual to gain access to genetic services is a victory and a step forward! United by patients, families, geneticists, genetic counselors, primary care physicians, and public health professionals, these seven states (Illinois, Indiana, Kentucky, Michigan, Minnesota, Ohio, and Wisconsin) are working to link medically underserved members of their communities to genetic services. Connect with the Midwest Genetics Network here

Check out their  Journey through Diagnosis Guide, a guide for families of children with a genetic condition, and their online Introduction to Health Care through Telemedicine .

Comprised of a collaboration of professionals, educators, consumers and advocat e s from
Connecticut, Maine, Massachusetts, New Hampshire,  Rhode Island, and Vermont, the 
New England Regional Genetics Network works to ensure "all individuals with genetic conditions in New England have the opportunity to achieve their fullest potential." To discover what that means for your family and loved ones in New England, connect with the  NERGN

Given that about 1 in 20 children (at least one child per classroom) in New England have a genetic health condition, the NERGN created the Genetics Education Materials for School Success (GEMSS) tool to help all children with genetic health conditions succeed in school life. This extensive resource encourages collaboration between families, schools, and medical professionals.

The New York Mid-Atlantic Consortium (NYMAC) is made up of individuals with genetic diseases, their families, advocates, health care and public health professionals from Delaware, the District of Columbia, Maryland, New Jersey, New York, Pennsylvania, Virginia, and West Virginia. The consortium works to ensure each individual has access to quality genetic care and appropriate genetic expertise according to their needs. Connect with NYMAC.
Check out their disorder-specific  Emergency Cards  and also the  Parent Corner, an online space for parents to share their stories

The Southeast Regional Genetics Network (SERN) works diligently to "translate research into practical health care services and systems to improve the health and quality of life of individuals with heritable conditions" in Alabama, Florida, Georgia, Louisiana, Mississippi, North and South Carolina, Tennessee, Puerto Rico, and the Virgin Islands. Connect with SERN here
If you are in the southeast region and searching for other families with individuals with similar disorders, check out Newborn Screening Connect: a web-based patient registry (focus on PKU, MSUD and tyrosinemia). 
Check out their Emergency Preparedness Toolkit for families with individuals with inherited metabolic disorders and the  Nutrition Guidelines Project  with nutrition toolkits and information by disorder .  

Rounding out this genetics-focused tour of the United States is the Western States Regional Genetics Network (WSRGN) working to increase access to genetic services and education for medically underserved populations located in Alaska, California, Guam, Hawaii, Idaho, Oregon, and Washington. Link into this strong network of collaborators  here
Check out their  Disorder Fact Sheets for parents of newborns.