About the NYMAC Page
NYMAC is a multi-state collaborative that strives to ensure the health of newborns and all persons in our region through newborn screening and life-long services for people who have conditions with a genetic component.
We collaborate with patients, families, medical
practitioners, leaders in public health, newborn
screening laboratories, and genetic specialists to:
• Identify needs and educate patients, their
families, practitioners, and the general public
• Develop, implement, and promote improved
practices in and access to testing, diagnostics,
treatment, and follow-up care
NYMAC is funded through a grant from the Maternal and Child Health Bureau of the Health Resources and Services Administration (MCHB/HRSA.)
We look forward to hearing from you, but please keep in mind while this is an open forum we ask that your comments and wall posts are clean and family-friendly. Below are posting guidelines. Comments and wall posts that do not comply with these guidelines will be removed.
- Graphic, obscene, explicit or racial comments are NOT allowed, nor do we allow comments that are abusive in nature, hateful or intended to defame a person, organization or institution.
- Solicitations and advertisements are prohibited. This includes promotions and endorsements of any financial, commercial or non-government agency.
- We do not allow comments that suggest or encourage illegal activity of any kind.
Thank you in advance for abiding by these family-friendly guidelines. We're looking forward to empowering you to live a healthy life.
Comments
The details of chromosome disorders can be confusing! The Genetic and Rare Disease Information Center (GARD) from the National Human Genome Research Institute has put together answers to frequently asked questions on this topic. Learn more about types of chromosome differences, how they occur, diagnosis, and more by checking out this page! ⬇️
https://rarediseases.info.nih.gov/guides/pages/73/faqs-about-chromosome-disorders
All of Us Research is a country-wide program that aims to increase the diversity in genetics research to better represent our communities! In this lecture, Dr. Francisco Moreno speaks about the importance of diversity and inclusion in the All of Us program. Watch to learn more and visit our site for more genetics resources! ⬇️
"Are Birth Defects caused by genetics?" 🤔
Many on their genetics journey find more questions than answers. The team is here to change that. We break genetics down to the basics so you don't have to.
Access genetics resources + find care near you!
➡️
www.nymacgenetics.org
Today is ! 🧬
Did you know that inherited gene changes play a role in about 10-15% of pancreatic cancers?
If you are concerned about your risk of developing and are interested in counseling or testing, you can find a genetics clinic near you through our website! 👉
https://nymacgenetics.org/find-a-genetics-clinic
Would you like to receive regular updates about events and opportunities from NYMAC? We have over 1,300 patients, families, and providers on our regional email list! 📧
Sign up today by visiting the "Contact" tab on our website!
Happy Genetic Counselor Awareness Day! 🧬 Join us today in celebrating the crucial role genetic counselors play in people’s healthcare – from helping them better understand the genetic testing process, to identifying key information in their family health history, to supporting them through an important medical decision. Learn more:
https://bit.ly/2WLocxs
National Society of Genetic Counselors
Do you or a loved one have a rare condition? Are you looking for support services? National Organization for Rare Disorders, Inc. (NORD) provides a great list of patient organizations for rare health conditions. Check it out! 👇
Check out this free training for early educators on the importance of developmental milestones.
Our friends at the National Genetics Education and Family Support Center are adding a Family Engagement Specialist to their team...check out their post!
What is genetic carrier screening? This type of genetic testing can help parents learn more about genetic conditions their future child may be at risk of developing... even if both parents are healthy! Check out this page by the CDC that explains the importance of carrier screening for expecting parents! 👇
Did you know that 10-15% of pancreatic cancers can be genetic? 🧬Inherited gene changes can increase your cancer risk. Access genetic resources + find care near you! 👉 NYMACGenetics.org
Para abordar las necesidades únicas de las familias en Puerto Rico, estamos colaborando con un grupo diverso de partes interesadas, este grupo se reunirá en el transcurso de varios años para compartir sus perspectivas y experiencias sobre las barreras que enfrentan las familias cuando necesitan accesar servicios de genética en Puerto Rico.
Recursos genéticos en Puerto Rico:
https://nymacgenetics.org/genetics-resources-in-puerto-rico/
What can you do to prepare for the future of genetics as a provider? In this podcast by the Mayo Clinic , genetics providers discuss the rise of predictive genomics and how we can prepare for the changes to come in genetics. Take a listen! ⬇️
Did you know that partners with healthcare providers and public health professionals? 🧑⚕️ Last year, we educated over 750 healthcare providers about genetics!
Are you or your seeking information on ? Visit our website to discover how we make genetics resources and services accessible to everyone! ➡️
www.NYMACGenetics
Check out this great podcast series by our colleagues at the National Genetics Education and Family Support Center where they talk with families with genetic conditions about system leadership and change.
Wondering what to expect from your first appointment? 🤷
At your appointment, a genetic counselor will:
- Ask questions regarding your personal and family health history
- Explain potential genetic testing or already acquired test results
- Answer any questions you may have about your journey to a diagnosis
Save the date for this year's , which will take place on Thursday, November 10, 2022! ⬇️
https://www.nsgc.org/Education-and-Events/Genetic-Counselor-Awareness-Day