On Tuesday, December 8 at 6:00 PM and 8:00 PM EST, BioMarin will be hosting a virtual event for caregivers and families with children with achondroplasia featuring Colleen Ditro, NP from the A.I. duPont Hospital for Children in Wilmington, Delaware.
Achondroplasia can come with a lot of questions, so BioMarin has organized the Getting in the Know virtual event to help caregivers and families get the knowledge they need from experts in achondroplasia.
- Learn what causes achondroplasia and how it affects bone growth.
- See how to assemble a supportive care team.
- Participate in moderated Question and Answer session with experts.
If you are unable to attend live, you can sign up for an on-demand recording of the event.
To register, click here.
The 2020 annual meeting of the New England Consortium of Metabolic Programs will be held virtually due to the ongoing COVID-19 pandemic. The meeting is open to all Consortium members. For additional information and registration information, click here.
This virtual conference features keynote speaker Dr. Priya
Friday, November 6, 2020
9:00 am-12:30 pm, ET
Keynote Speaker: Dr. Priya Kishnani, Duke Department of Pediatrics
Alexion invites you to a Zoom webinar, Wednesday, November 17, 2021, 8 PM ET, presented by Alexion AstraZeneca Rare Disease.
Topic: For Patients with Hypophosphatasia (HPP): One Enzyme, a World of Potential
Presenter: Eric T. Rush, MD, FAAP, FACMG
Pediatric Genetics
Medical Director, Office of Faculty Affairs & Development; Associate Professor of Pediatrics, University of Missouri-Kansas City School of Medicine; Clinical Associate Professor of Internal Medicine, University of Kansas School of Medicine
To register, click here
After registering, you will receive a confirmation email containing information about joining the webinar.
Live Webinar, Thursday, November 18, 2021, 4:00 – 5:00 PM EST presented by BioMarin
Genetic Testing – Driving Disease-Specific Management for Pediatric Epilepsy
Presenters: Elaine C. Wirrell MD, Mayo Clinic and Scott T. Demarest MD, Children’s Hospital of Colorado
This webinar will provide an overview of early-onset genetic epilepsies and key learnings from the Behind the Seizure gene panel program. Drawing from their extensive clinical experience, Dr. Wirrell and Dr. Demarest will illustrate the importance of early diagnosis and the role of genetic testing in the diagnostic process of pediatric epilepsy, with examples of some actionable genes.
To register, click here.
Rare New England is hosting four online Genetics Career Fairs during the fall of 2020 and the spring of 2021. The fall events will be on November 10 and December 10, 6:30-7:30 pm ET.
The goal of these career fairs is to attract and inspire young professionals – medical students, pediatric and medicine interns and residents, undergraduate/graduate genetics students – to consider a career in genetics, a very promising and expanding area of medicine but one with a serious workforce shortage. This shortage is compromising the promising benefits that can come from all the research and clinical effort underway in this country and around the world.
Attendees of the career fairs will have an opportunity to hear from three different types of geneticists – a clinical (or general) geneticist, a biochemical (or metabolic) geneticist, and a research/laboratory/industry geneticist. Speakers typically describe “a day in the life of a geneticist.” They talk about interesting cases and share their passion for patient care and/or contributing to science and the development of new therapies.
Additional information can be found
here.
Registration/RSVP for the Fall 2020 online career fairs can be found
here.
For NERGG’s earlier posts of news and educational opportunities click
here.
SAVE THE DATES
The Virtual 44th Annual Educational Conference will be presented on Thursday and Friday, December 2 and 3, 2021. More details will be posted later in the year.
Pancreatic Cancer: Your Family, Genes, and Cancer Risk (Virtual Event)
Massachusetts General Hospital Cancer Center, Center for Cancer Risk Assessment
Join the Center for Cancer Risk Assessment (CCRA) for a free virtual patient symposium for patients and families to learn about the most recent updates in hereditary cancer risk assessment for pancreatic cancer. Saturday, November 21, 2020, 9 AM-noon.
For more information and to register, click here.
For posts of earlier news and educational opportunities click here.
Sanofi Genzyme invites you to a virtual discussion of Gaucher Disease presented by Stuart Ditchek, MD, FAAP of the NYU School of Medicine.
Thursday, November 19, 2020, 7:00 PM ET
Webinar Registration here.
The 2020 annual meeting of the New England Consortium of Metabolic Programs will be held virtually due to the ongoing COVID-19 pandemic on Friday, November 6, 2020, 9:00 am-12:30 pm ET. The meeting is open to all Consortium members. For more information and registration, click here. This virtual meeting will feature keynote speaker Dr. Priya Kishnani of the Duke University Department of Pediatrics.
BioMarin presents a virtual educational program focused on skeletal dysplasia red flag symptoms and confirmatory genetic testing. The Program will take place October 29, 2020 at 11:30 am EST.
Many patients are diagnosed with skeletal dysplasias without confirmatory testing. Delayed or incomplete diagnoses can result in less-than-optimal patient outcomes, including potential surgical risks. Join us to learn the “red flag” signs and symptoms to watch for, and how genetic testing can create better opportunities for disease-specific care.
Dr. Cathleen Raggio has been a practicing orthopedic surgeon for over 30 years and is the Orthopedic Director of the Kathryn O. and Alan C. Greenberg Center for Skeletal Dysplasias at the Hospital for Special Surgery. She has been involved in many clinical trials and is associated with several societies, including the Orthopedic Research Society, the Scoliosis Research Society, Pediatric Orthopaedic Society of North America, and the Osteogenesis Imperfecta Foundation. Her contributions extend beyond her practice and research, and she has been recognized with several awards that appreciate her role in raising awareness of skeletal dysplasia.
To register, click here.
For posts of earlier news and educational opportunities click here.
