Local Organizations:
- P.A.C.E. Nevada – Bridging the Gap Between Pediatric and Adult Cardiology
- Down Syndrome Organization of Southern Nevada – Their mission is to enlighten the public by promoting a positive understanding of Down syndrome in the community and be a source of support, information and education.
- Make A Wish Southern Nevada – Grants the wish of a child diagnosed with a life-threatening medical conditions in the Southern Nevada area.
- Ronald McDonald House, Greater Las Vegas – Provides temporary housing for families who travel to Las Vegas to receive critical medical treatment for their children.
- Nevada Donor Network – Their core purpose is to provide hope strength and life to more than 2 million people in the state of Nevada and thousands of potential transplant recipients across the country.
National Organization:
- ACHA: Adult Congenital Heart Association – All Congenital Heart Defect survivors should have the “toolkit” they need to protect and improve their lifelong health and well-being.
- American Heart Association – Congenital Heart Defects Tools and Resources.
- Cardiac Arrhythmias Research and Education Foundation – Formulates, promotes and leads initiatives to prevent sudden cardiac death due to acquired and inherited heart rhythm disorders.
- CHARGE Syndrome Foundation – Provides support to individuals with CHARGE syndrome and their families.
- Children’s Cardiomyopathy Foundation – Dedicated to accelerating the search for cures while improving diagnosis, treatment and quality of life for children affected by cardiomyopathy.
- Children’s Miracle Network – They increase funds and awareness for local children’s hospitals.
- Congenital Heart Information Network – Provides reliable information, advocacy, support services, financial assistance and resources to people affected by congenital heart defects.
- Heterotaxy Foundation – Focuses on research and promotes awareness of Heterotaxy Syndrome.
- National Association for Down Syndrome – Our mission is to ensure that all persons with Down syndrome have the opportunity to achieve their potential in all aspects of community life.
- National Heart Lung and Blood Institute – Provides science-based, easy-to-understand information related to heart, lung and blood diseases and conditions.
- Noonan Syndrome Foundation – Focused on finding life-saving and effective medical treatments, raising awareness, educating the public and healthcare providers, building community through social media and providing informational support services to our community.
- Ronald McDonald House Charities – Provides temporary housing for families who travel to Las Vegas to receive critical medical treatment for their children.
- Spina Bifida Association – Serves adults and children who live with the challenges of Spina Bifida. Its tools are education, advocacy, research, and service.
Financial & Social Resources:
- The Children’s Free Clinic of Southern Nevada – Offering free immunizations and medical services for all children ages 0 to 18.
- Children’s Heart Center Nevada – Providing the very best care to children with heart disease. They see all children in need of our services. And on the same day, if necessary.
- Family Medical and Leave ACT (FMLA) – The Family and Medical Leave Act (FMLA) entitles eligible employees of covered employers to take unpaid, job-protected leave for specified family and medical reasons.
- HELP of Southern Nevada – They assist families and individuals throughout Southern Nevada to overcome barriers and attain self-sufficiency through direct services, training and referral to community resources.
- MTM – Non-Emergency Medical Transportation (NET) for those covered by State of Nevada Medicaid. Call 1-844-879-7341 to schedule transportation.
- MedicAlert Foundation – Conveys your child’s medical history in a fast and reliable manner.
- Nevada Early Intervention – If you are concerned about your child’s development, the first step is to have your child referred for evaluation and assessment.
- Nevada Health Link – Nevada Health Link was created by the State of Nevada to help individuals and small businesses easily shop for, compare and buy health insurance.
- Nevada Health Centers – They believe that all people, regardless of where they live or their ability to pay, have the right to access affordable, quality medical and dental care.’
- Nevada Medicaid – Assists in providing quality medical care for eligible individuals and families with low incomes and limited resources.
- Nevada Women, Infants, and Children (WIC) – Supplemental Nutrition Program provides supplemental foods, health care referrals, and nutrition education for low-income pregnant, breastfeeding, and non-breastfeeding postpartum women and to infants and children up to age five who are found to be at nutritional risk.
- State of Nevada Energy Assistance Program – Provides both direct financial and weatherization assistance to low-income households who meet their income guidelines.
- UNLV Dental Clinics – The UNLV School of Dental Medicine is committed to increasing access to quality oral health care for all Nevadans.
Organ Transplant Resources:
- Nevada Donor Network – Their core purpose is to provide hope strength and life to more than 2 million people in the state of Nevada and thousands of potential transplant recipients across the country.
- American Organ Transplant Association – Helps patients lead happy, productive lives by helping them to obtain and sustain transplantation.
- Children’s Organ Transplant Association – Helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support.
- Donate Life America – Committed to increasing organ, eye and tissue donation.
- National Foundation for Transplants – Offers fundraising assistance for organ and tissue transplant patients across the country.
- Transplant Recipients International Organization, Inc. – Committed to improving the quality of life of transplant candidates, recipients, their families and the families of organ and tissue donors.
- The United Network for Organ Sharing (UNOS) – Manages the nation’s organ transplant system under contract with the federal government.
- The U.S. Department of Health and Human Services/OrganDonor.gov – U.S. government-provided information on organ and tissue donation and transplantation.
Parent Support Groups:
- Heart & Soul Support Group – A cost-free support discussion group for families who have children with congenital heart conditions.
- Little Hearts, Inc. – Provides support, education, resources, networking and hope to families affected by congenital heart defects.
- POTS – Parent support group for families of children with POTS. If you would like additional information, please contact Debbie Neubecker at: dneubeck1234@cox.net.
Adult Support Groups:
- ACHA: Adult Congenital Heart Association – A place for registered ACHA members to discuss issues with other members of the ACHA community and provide and receive support.
- P.A.C.E. Nevada – Bridging the Gap Between Pediatric and Adult Cardiology
- Down Syndrome Organization of Southern Nevada – Their mission is to enlighten the public by promoting a positive understanding of Down syndrome in the community and be a source of support, information and education.
- Make A Wish Southern Nevada – Grants the wish of a child diagnosed with a life-threatening medical conditions in the Southern Nevada area.
- Ronald McDonald House, Greater Las Vegas – Provides temporary housing for families who travel to Las Vegas to receive critical medical treatment for their children.
- Nevada Donor Network – Their core purpose is to provide hope strength and life to more than 2 million people in the state of Nevada and thousands of potential transplant recipients across the country.
National Organization:
- ACHA: Adult Congenital Heart Association – All Congenital Heart Defect survivors should have the “toolkit” they need to protect and improve their lifelong health and well-being.
- American Heart Association – Congenital Heart Defects Tools and Resources.
- Cardiac Arrhythmias Research and Education Foundation – Formulates, promotes and leads initiatives to prevent sudden cardiac death due to acquired and inherited heart rhythm disorders.
- CHARGE Syndrome Foundation – Provides support to individuals with CHARGE syndrome and their families.
- Children’s Cardiomyopathy Foundation – Dedicated to accelerating the search for cures while improving diagnosis, treatment and quality of life for children affected by cardiomyopathy.
- Children’s Miracle Network – They increase funds and awareness for local children’s hospitals.
- Congenital Heart Information Network – Provides reliable information, advocacy, support services, financial assistance and resources to people affected by congenital heart defects.
- Heterotaxy Foundation – Focuses on research and promotes awareness of Heterotaxy Syndrome.
- National Association for Down Syndrome – Our mission is to ensure that all persons with Down syndrome have the opportunity to achieve their potential in all aspects of community life.
- National Heart Lung and Blood Institute – Provides science-based, easy-to-understand information related to heart, lung and blood diseases and conditions.
- Noonan Syndrome Foundation – Focused on finding life-saving and effective medical treatments, raising awareness, educating the public and healthcare providers, building community through social media and providing informational support services to our community.
- Ronald McDonald House Charities – Provides temporary housing for families who travel to Las Vegas to receive critical medical treatment for their children.
- Spina Bifida Association – Serves adults and children who live with the challenges of Spina Bifida. Its tools are education, advocacy, research, and service.
Financial & Social Resources:
- The Children’s Free Clinic of Southern Nevada – Offering free immunizations and medical services for all children ages 0 to 18.
- Children’s Heart Center Nevada – Providing the very best care to children with heart disease. They see all children in need of our services. And on the same day, if necessary.
- Family Medical and Leave ACT (FMLA) – The Family and Medical Leave Act (FMLA) entitles eligible employees of covered employers to take unpaid, job-protected leave for specified family and medical reasons.
- HELP of Southern Nevada – They assist families and individuals throughout Southern Nevada to overcome barriers and attain self-sufficiency through direct services, training and referral to community resources.
- MTM – Non-Emergency Medical Transportation (NET) for those covered by State of Nevada Medicaid. Call 1-844-879-7341 to schedule transportation.
- MedicAlert Foundation – Conveys your child’s medical history in a fast and reliable manner.
- Nevada Early Intervention – If you are concerned about your child’s development, the first step is to have your child referred for evaluation and assessment.
- Nevada Health Link – Nevada Health Link was created by the State of Nevada to help individuals and small businesses easily shop for, compare and buy health insurance.
- Nevada Health Centers – They believe that all people, regardless of where they live or their ability to pay, have the right to access affordable, quality medical and dental care.’
- Nevada Medicaid – Assists in providing quality medical care for eligible individuals and families with low incomes and limited resources.
- Nevada Women, Infants, and Children (WIC) – Supplemental Nutrition Program provides supplemental foods, health care referrals, and nutrition education for low-income pregnant, breastfeeding, and non-breastfeeding postpartum women and to infants and children up to age five who are found to be at nutritional risk.
- State of Nevada Energy Assistance Program – Provides both direct financial and weatherization assistance to low-income households who meet their income guidelines.
- UNLV Dental Clinics – The UNLV School of Dental Medicine is committed to increasing access to quality oral health care for all Nevadans.
Organ Transplant Resources:
- Nevada Donor Network – Their core purpose is to provide hope strength and life to more than 2 million people in the state of Nevada and thousands of potential transplant recipients across the country.
- American Organ Transplant Association – Helps patients lead happy, productive lives by helping them to obtain and sustain transplantation.
- Children’s Organ Transplant Association – Helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support.
- Donate Life America – Committed to increasing organ, eye and tissue donation.
- National Foundation for Transplants – Offers fundraising assistance for organ and tissue transplant patients across the country.
- Transplant Recipients International Organization, Inc. – Committed to improving the quality of life of transplant candidates, recipients, their families and the families of organ and tissue donors.
- The United Network for Organ Sharing (UNOS) – Manages the nation’s organ transplant system under contract with the federal government.
- The U.S. Department of Health and Human Services/OrganDonor.gov – U.S. government-provided information on organ and tissue donation and transplantation.
Parent Support Groups:
- Heart & Soul Support Group – A cost-free support discussion group for families who have children with congenital heart conditions.
- Little Hearts, Inc. – Provides support, education, resources, networking and hope to families affected by congenital heart defects.
- POTS – Parent support group for families of children with POTS. If you would like additional information, please contact Debbie Neubecker at: dneubeck1234@cox.net.
Adult Support Groups:
- ACHA: Adult Congenital Heart Association – A place for registered ACHA members to discuss issues with other members of the ACHA community and provide and receive support.
- The Children’s Free Clinic of Southern Nevada – Offering free immunizations and medical services for all children ages 0 to 18.
- Children’s Heart Center Nevada – Providing the very best care to children with heart disease. They see all children in need of our services. And on the same day, if necessary.
- Family Medical and Leave ACT (FMLA) – The Family and Medical Leave Act (FMLA) entitles eligible employees of covered employers to take unpaid, job-protected leave for specified family and medical reasons.
- HELP of Southern Nevada – They assist families and individuals throughout Southern Nevada to overcome barriers and attain self-sufficiency through direct services, training and referral to community resources.
- MTM – Non-Emergency Medical Transportation (NET) for those covered by State of Nevada Medicaid. Call 1-844-879-7341 to schedule transportation.
- MedicAlert Foundation – Conveys your child’s medical history in a fast and reliable manner.
- Nevada Early Intervention – If you are concerned about your child’s development, the first step is to have your child referred for evaluation and assessment.
- Nevada Health Link – Nevada Health Link was created by the State of Nevada to help individuals and small businesses easily shop for, compare and buy health insurance.
- Nevada Health Centers – They believe that all people, regardless of where they live or their ability to pay, have the right to access affordable, quality medical and dental care.’
- Nevada Medicaid – Assists in providing quality medical care for eligible individuals and families with low incomes and limited resources.
- Nevada Women, Infants, and Children (WIC) – Supplemental Nutrition Program provides supplemental foods, health care referrals, and nutrition education for low-income pregnant, breastfeeding, and non-breastfeeding postpartum women and to infants and children up to age five who are found to be at nutritional risk.
- State of Nevada Energy Assistance Program – Provides both direct financial and weatherization assistance to low-income households who meet their income guidelines.
- UNLV Dental Clinics – The UNLV School of Dental Medicine is committed to increasing access to quality oral health care for all Nevadans.
Organ Transplant Resources:
- Nevada Donor Network – Their core purpose is to provide hope strength and life to more than 2 million people in the state of Nevada and thousands of potential transplant recipients across the country.
- American Organ Transplant Association – Helps patients lead happy, productive lives by helping them to obtain and sustain transplantation.
- Children’s Organ Transplant Association – Helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support.
- Donate Life America – Committed to increasing organ, eye and tissue donation.
- National Foundation for Transplants – Offers fundraising assistance for organ and tissue transplant patients across the country.
- Transplant Recipients International Organization, Inc. – Committed to improving the quality of life of transplant candidates, recipients, their families and the families of organ and tissue donors.
- The United Network for Organ Sharing (UNOS) – Manages the nation’s organ transplant system under contract with the federal government.
- The U.S. Department of Health and Human Services/OrganDonor.gov – U.S. government-provided information on organ and tissue donation and transplantation.
Parent Support Groups:
- Heart & Soul Support Group – A cost-free support discussion group for families who have children with congenital heart conditions.
- Little Hearts, Inc. – Provides support, education, resources, networking and hope to families affected by congenital heart defects.
- POTS – Parent support group for families of children with POTS. If you would like additional information, please contact Debbie Neubecker at: dneubeck1234@cox.net.
Adult Support Groups:
- ACHA: Adult Congenital Heart Association – A place for registered ACHA members to discuss issues with other members of the ACHA community and provide and receive support.
- Heart & Soul Support Group – A cost-free support discussion group for families who have children with congenital heart conditions.
- Little Hearts, Inc. – Provides support, education, resources, networking and hope to families affected by congenital heart defects.
- POTS – Parent support group for families of children with POTS. If you would like additional information, please contact Debbie Neubecker at: dneubeck1234@cox.net.
Adult Support Groups:
- ACHA: Adult Congenital Heart Association – A place for registered ACHA members to discuss issues with other members of the ACHA community and provide and receive support.
BIG S HELPING LITTLE S