NYMAC - New York Mid-Atlantic Caribbean Regional Genetics Network

11/23/2022

Contact Us - Genetic and Rare Diseases Information Center

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

Use the phone number or other contact options to ask a rare disease information specialist a question or provide feedback to the Genetic and Rare Diseases Information Center.

11/21/2022

Genetics Summit 2021: Personalized Medicine, Francisco Moreno - Mountain States Genetics

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! ⬇️

Return To All Genetics Summit 2021 Sessions Personalized Medicine and Diverse Participation: Perspectives from the All of Us Program in Arizona Dr.Francisco Moreno Associate Vice President UAHS, Equity Diversity and Inclusion University of Arizona To access the SLIDES for this Presentation click her...

11/18/2022

"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

11/17/2022

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

11/14/2022

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!

11/10/2022

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

11/09/2022

Find a Patient Organization - NORD (National Organization for Rare Disorders)

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! 👇

Find a Rare Diseases Organization in NORD's Rare Disease Information Database.

11/07/2022

Watch Me! Celebrating Milestones and Sharing Concerns

Check out this free training for early educators on the importance of developmental milestones.

CDC offers a FREE, online training (with CEU), to provide early educators with tools and best practices for monitoring children’s development.

11/07/2022

Our friends at the National Genetics Education and Family Support Center are adding a Family Engagement Specialist to their team...check out their post!

Are you passionate about working with people, connecting with different communities, and improving family engagement within the genetics healthcare delivery system? This is the position for you! Apply today at https://bit.ly/3t7bSEm

Don’t think that you will meet every single requirement? Studies have shown that women and people of color are less likely to apply for jobs unless they feel that they meet every single qualification. At Expecting Health, we are dedicated to building a diverse, inclusive, and authentic workplace. So, if you’re excited about this role but your past experience doesn’t align perfectly with every qualification in the job description, we encourage you to apply anyway! You may be just the right candidate for this or other roles.

11/07/2022

Family Health History and Planning for Pregnancy | CDC

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! 👇

Thinking about having a baby? If you have a family health history that includes a birth defect, developmental disability, newborn screening disorder, or genetic disease, you might be more likely to have a baby with this condition.

11/04/2022

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

11/02/2022

Recursos genéticos en Puerto Rico (Genetics Resources in Puerto Rico)

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/

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 a...

11/02/2022

‎Mayo Clinic Talks: Genes & Your Health Edition - Preparing Your Practice for the Increased Use of Genomics on Apple Podcasts

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! ⬇️

‎Show Mayo Clinic Talks, Ep Genes & Your Health Edition - Preparing Your Practice for the Increased Use of Genomics - Nov 4, 2021

10/31/2022

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

10/28/2022

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.

We invite you to listen in on what it really means to be a family leader trying to effect change in healthcare. Tune into our new podcast series highlighting and honoring the voices of family leaders as they engage in discussions about their experiences navigating the systems they are now working to change. The first three episodes are available now!

What a great team of Marisol P Rose, Linda Starnes, and Molly Chambers Martzke, Sarita Edwards from The E.WE Foundation

Find podcast posts https://linktr.ee/nationalfamilycenter or search for “National Genetics Education and Family Support Center” on the following platforms: Spotify, Apple Podcasts, Google Podcasts, Amazon Music, and YouTube.

10/28/2022

NSGC > Education and Events > Genetic Counselor Awareness Day

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

Genetic Counselor Awareness Day is typically hosted on the second Thursday in November each year. It is dedicated to empowering genetic counselors to help raise awareness and interest about genetic counselors in your communities and institutions, and to help consumers understand the important an...

10/27/2022

Our colleague Molly Martzke talks about Family History is this great podcast, check it out...more to come!!! National Genetics Education and Family Support Center Being Rare Podcast

10/26/2022

Genetics Pop-Up Red Flags 4 Genetics: October 12th 2pm ET/1pm CT/ noon MT/11am PT

Check out a great session on a family-developed Red Flags for Genetics resource from our colleagues at the Mountain States Regional Genetics Network
https://fb.watch/gphoNImXA_/

10/26/2022

EveryLife Foundation for Rare Diseases

You and your family deserve the best care possible! 👪 EveryLife Foundation for Rare Diseases works to empower patients with to speak up and fight for better care. Check out their website to see how you can get involved and become an advocate for yourself and others!

We empower the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments, and cures.

10/24/2022

MyGene2

If you're searching for other families or patients with the same genetic condition, check out MyGene2! MyGene2 is a registry of profiles of families that have genetic conditions so that they can connect with one another. Check out MyGene2 to share, unite, and discover! https://www.mygene2.org/MyGene2/

Uniting families, clinicians, and researchers for rare disease discovery.

10/21/2022

¿Por qué es importante la genética para mí y mi familia?

¿Quiere entender la genética y por qué es importante para usted y su familia? ¡Mira este enlace! ¡Puede encontrar más información y artículos como este en la página de recursos en español de NYMAC! https://www.ncbi.nlm.nih.gov/books/NBK115597/

Cada persona es única por muchas razones. Parte de lo que nos hace únicos se encuentra en nuestros genes. Los genes son pequeñas estructuras dentro de las células que transportan instrucciones. Las instrucciones tienen influencia sobre nuestros rasgos físicos y la función del cuerpo. Como los ...

10/19/2022

Lexigene - Translate

Are you looking for a reliable source of language translations for genetics terms? Lexigene is a great resource that provides translations in English, Spanish, and French for genetics terms that may be used in a genetic counseling appointment. This resource can be helpful for both patients and providers to break down language barriers! Check out Lexigene for more ⬇️ and visit NYMACgenetics.org for other genetics resources!

10/17/2022

"Living with an unpredictable genetic condition like Factor V Leiden has opened my eyes to the beauty of living. I see living in the moment now as more than just a passing glance."

A family shares their story of living with Factor V Leiden, an autosomal dominant condition that causes an increased risk of forming blood clots. 🧬 Visit DNAandU 's website to learn more about how changed this family's perspective and helped them better understand their health!

10/14/2022

Have you heard of Hermansky-Pudlak Syndrome (HPS)? 🧬 HPS is a genetic condition that causes , vision impairment, and problems with blood clotting.

To learn more about , check out HPS Network . HPS Network provides resources for families and individuals with HPS and advocates for improved care and innovative research!

10/13/2022

Families in Virginia, there's a new group at the Center for Family Involvement that could be useful. Check out all of CFI's great programs.

CFI has created a new closed FB page and would love to have you join us! This group is for Virginia parents, caregivers, family members of all children who are deaf or hard of hearing. In this group we welcome and honor all forms of communication choices. Click on the link below:
https://www.facebook.com/groups/729398954853659/

10/12/2022

During Cancer Awareness Month, NYMAC wants to highlight some of the key resources around breast cancer and genetics. This piece from National Society of Genetic Counselors describes how genetic counseling and testing can help inform treatment choices for individuals diagnosed with metastatic breast cancer.

In honor of Breast Cancer Awareness Month, learn more about the importance of having conversations about family health history with both male and female relatives to learn about your inherited cancer risk. Read the full piece by NSGC Cancer Expert Joy Larsen Haidle here: https://bit.ly/3CpV8fK

10/12/2022

The Rare Genomes Project - Participation Overview

Do you or a family member have a rare and undiagnosed health challenge that your doctors suspect might be genetic? 🧬 You may be eligible to participate in the Rare Genomes Project through the Broad Institute of MIT and Harvard . If enrolled, researchers will use advanced genetic technology to look for the cause of the rare condition in your family. To learn more, check out the Rare Genomes Project! ➡️ https://youtu.be/ux4_MwSALrc

The Rare Genomes Project - Participation OverviewThe Rare Genomes Project at the Broad Institute is a patient-driven research study led by genomics experts a...

10/10/2022

Our team has been busy! 😉 We are committed to ensuring that those with genetic conditions and their families have access to the care and support they need to navigate their diagnosis through genetic testing, counseling, and other services.

Visit our website to learn how genetics services could help your family! 👉 NYMACGenetics.org

10/07/2022

Genetics Summit 2022 - Mountain States Genetics

The Virtual MSRGN Genetics Summit 2022 is coming to a screen near you November 9-10, 2022! Registration is OPEN! Don't miss out on this annual event hosted by the Mountain States Regional Genetics Network ! 🧬

Want a refresher of last year's conference? Recordings of previous sessions of the Genetics Summit 2021 are available! Learn more about disease and diagnosis, outreach, total value, and social perspectives through these lectures by genetics professionals. ⬇️ https://www.mountainstatesgenetics.org/gs2021recordings/

Save The Date & Register TODAY! MSRGN’s Genetics Summit 2022: Momentum in the Mountains A Virtual Event to be held on November 9-10, 2022 Tentatively Starting at: 8:30 am PT, 9:30 am MT, 10:30 am CT, 11:30 am ET and tentatively ending at: 2 pm PT, 3 pm MT, 4 pm CT, 5 pm ET... Read More

10/05/2022

Family Voices, Inc. (National) has many great programs and resources for Spanish speaking families, NYMAC is so grateful for their collaboration with our work.

Celebrando el mes de la herencia hispana con Family Voices. Cada año celebramos el Mes Nacional de la Herencia Hispana desde el 15 de septiembre hasta el 15 de octubre. Para celebrar, ¡comparte con nosotros qué significa para usted ser hispano/latino! Obtén más información sobre los recursos disponibles en español para las familias, visitando: familyvoices.org/resources.

10/05/2022

Milestones Matter for Families!

The Parents' Place of Maryland shared useful resources for helping families track their children's development and have discussions with their healthcare team.

In this video, parents of young children share their personal experiences of using CDC’s “Learn the Signs. Act Early.” tools and resources to learn about chi...

10/05/2022

CFI: EN ESPANOL

The Center for Family Involvement is doing so many great things for families in Virginia. Check out their page!

El Centro Para la Participacion Familiar estacomprometido en el mejoramiento de resultados enniños, jovenes y adultos con discapacidades, a través de nuestro compromiso a largo plazo de apoyar la p…

10/05/2022

Meet Oksana Kutsa, Evaluation Consultant at NYMAC - New York Mid-Atlantic Caribbean Regional Genetics Network ! 👋 We asked Oksana, 'What does mean to you?' ⬇️

"Program evaluation through data collection and analysis helps NYMAC to assess the effectiveness of current projects and initiatives. Data collection through surveys, interviews, and focus groups helps us identify the need for access to genetic services. By understanding the effectiveness of such programs, the NYMAC team can address identified challenges and make any needed changes. Therefore, data collection and evaluation is an important part of improving NYMAC's efforts around increasing access and availability of genetic services."

10/03/2022

Get registered! On October 8, the next Community Connections Support Interactive Virtual Support meeting from the Sickle Cell Thalassemia Patients Network is covering Lessons in Assertive Advocacy. Follow this link to register and attend! ⬇️ https://us02web.zoom.us/meeting/register/tZArfuigqTovHtcQiR1-BjSHOFSjxqdz4xmY

09/30/2022

Pruebas de laboratorio para el recién nacido (cernimiento neonatal del laboratorio)

¿Ha oído hablar de la prueba de cernimiento neonatal, pero no está seguro de qué es? Mire este breve video de Heartland Regional Genetics Networks, ya que explica el proceso de detección de condiciones genéticas en el laboratorio del recién nacido y muestra el proceso de derivación a una clínica de genética cuando cualquier prueba de laboratorio es positiva.

Esté corto video explicá el procesó de pruebas de laboratorio para condicións de genéticas. Esté video también habla de cuándo una de las pruebas sale posit...

09/30/2022

Emergency Preparedness – The PEAL Center

Families living with special health care needs and genetic conditions often have unique concerns and considerations when planning for emergencies. Here are some resources from PEAL Center to help.

PREPARE – Partners In Pediatric Readiness, Emergency Preparedness, and Response Education This virtual training brings together families and pediatric emergency care coordinators to learn from each other, build trust, and practice real-life skills during an emergency. The PREPaRE Training and Comp...

09/30/2022

Family leaders are key collaborators in NYMAC's work. Here's a great opportunity to support PA's family leaders from our friends at the PEAL Center... PEAL Center

DEADLINE EXTENDED

PEAL has a few more available slots for the Northeastern FLI and we will be extending the application deadline to October 7th, 2022.

Please consider applying or share within your network!

Apply at: https://www.surveymonkey.com/r/FLINEPA

09/29/2022

Are you LatinX and interested in a career in genetic counseling? Check out this great opportunity on Sep 30, hosted by the Minority Genetic Professionals Network and the NSGC Spanish Development Special Interest Group. Register to learn more about the application process and life as a GC student! 🧬

09/29/2022

Webinar tomorrow about genetic counseling program application-- "The LATINX student experience from application to acceptance." 3pm CT. Register here: http://tinyurl.com/LatinxGCStudent

09/28/2022

Nuestros pensamientos están con nuestros amigos y colaboradores en Puerto Rico mientras se recuperan del huracán Fiona. Esperamos que el pueblo de Puerto Rico esté a salvo y que la isla pueda recuperarse rápidamente.