617-963-0900 Director@NERGG.com

Rare New England Virtual Annual Conference – October 23, 2021

Improving Health Care Experiences in the Rare Disease Community

Registration is now open for RNE’s October 23rd 2021 Virtual Conference!

RNE will host a day of education and information to Rare Disease patients, caregivers, students, and professionals. Caregiver and Patient tickets are FREE this year.

To view agenda and speakers, click here.

BioMarin presents: Beyond the Bone: Recognizing the Common Signs of Uncommon Genetic Disorders – February 26, 2021

Dr. Cathleen Raggio, pediatric orthopedic surgeon, presents a virtual educational program, Beyond the Bone:  Recognizing the Common Signs of Uncommon Genetic Disorders, Friday, February 26, 2021, 10:30 am, ET.

Most skeletal dysplasias have a genetic component, yet 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. Raggio has been a practicing orthopedic surgeon for over 30 years. She 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 has been associated with several societies, including the Orthopedic Research Society, the Scoliosis Research Society, the 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 dysplasias.

To register, click here.

Quinnipiac University Rare Disease Day Symposium – February 27, 2021

Frank H. Netter MD School of Medicine at Quinnipiac University is hosting an online Rare Disease Day Symposium, on Saturday, February 27, 2021 from 9 am to 3 pm, ET.

Rare Disease Day is a global event that serves to raise awareness of over 7,000 identified rare diseases. Although each disease on its own is rare, together they affect approximately 1 in 10 Americans. Since 2015, the Frank H. Netter MD School of Medicine at Quinnipiac University has hosted a Rare Disease Day Symposium, providing an opportunity for patients, family members and researchers to share their stories, their research and insight into the development of novel therapeutics.

Clinicians may qualify for 3 AMA PRA Category 1 CME Credits for this year’s event.

To register click here.

RDD_SavetheDate_2021

July 2020 Update

Hello, NERGG Colleagues!

I hope you continue to be well and are able to enjoy this lovely summer weather.  It’s a great time for walks, picnics, stargazing, and so much more.  In this current time, it’s so important to make lemonade from lemons — literally!

Website Re-Launch:  Please check out our updated website at http://nergg.org.  I think that you’ll find it welcoming and easy to navigate.  Thank you to NERGG‘s Website Committee and consultant Jean Alexander for their hard work and creativity.  It’s a work-in-progress, so there is still more to be done.   If you have questions or suggestions, please let me know.

Annual Educational Conference:  In place of our traditional in-person conference, we will be hosting a virtual online event to deliver timely information about genetic conditions for families, providers, and advocates.  We are just in the planning stages, but we will offer this event over the course of two days, December 3 and 4, 2020.  Each day will be about four hours in length.  Stay tuned for further information.

JULY 15 webinar on Gaucher Type 1

Sanofi Genzyme cordially invites you to a discussion entitled:

Don’t Wait: Help Prevent Progression of Gaucher Disease Type 1
Presented by

Linda Spencer, NP
Pediatric NP, Genetics Children’s Hospital of Michigan

Wednesday, July 15, 2020 at 1:00 PM EDT

Click on the link below to register for this virtual event: URL:
https://healthstarcom.zoom.us/webinar/register/WN_hvpTMhTsQOCFoDLeI7l06g

Those are my brief announcements for now.  Stay well and please do keep in touch!

May 2020 Update

Hello, NERGG Colleagues!

I hope you are all well and adapting to our current work restrictions.  Thank you so very much for all you do to support the families you serve, your colleagues, and your own families.   Here are some items of note which you might like to explore.
AMAZON SMILE:  When you shop online, you can support NERGG by going through the Amazon Smile Program.  The following link will take you directly to smile.amazon.com in support of NERGG. They with donate 0.5% of your purchase to NERGG, and it won’t cost you a cent.  It’s a small way to make a potentially big difference.  Thank you!
https://smile.amazon.com/ch/01-0532101   If you encounter difficulties with the link, search for NERGG Inc. in the Amazon Smile Charities List.
PUBLIC HEALTH:  Here’s a timely celebration to recognize the incredible dedication, skills, and efforts of our Public Health workforce.  The website offers a number of educational activities, downloadable fact sheets, and social media images.  Check it out!
NEWBORN SCREENING AND COVID-19 WEBINAR MAY 21, 2020A national webinar on Newborn Screening COVID-19 Challenges and Response will take place on Thursday, May 21 from 2:00 pm- 3:30 pm ET. The Association of Public Health Laboratories (APHL) is co-hosting this webinar with the National Center for Hearing Assessment and Management (NCHAM). This will be set-up as a listening session with a panel of newborn screening experts discussing challenges, barriers and solutions to dried blood spot and hearing screening as well as the family engagement perspective during the Coronavirus (COVID-19) pandemic in the United States.  

Please confirm your availability to participate by registering for this free webinar here: aphl.zoom.us/meeting/register/…

Share any questions that you may have for the panelists via email with Sikha Singh at Sikha.Singh@aphl.org. These questions will be posed to the panelists during the webinar and may include, but are not limited to, discussion around solutions to newborn screening follow-up, telehealth, education, laboratory practice, system backlogs and more in dried blood spot and point of care newborn screening.

NERGG WEBSITE and JOB POSTINGS

With the assistance of a website consultant and an enthusiastic Website Committee, we are updating the NERGG website; stay tuned for a roll-out of the new site in the coming months.  We will also be re-energizing our presence on social media.  Please keep the NERGG website in mind when your organization wishes to advertise job postings.  The cost is $150 for up to one month, and ads can be renewed as often as is necessary.

ANNUAL EDUCATIONAL CONFERENCE

Optimistic view:  Save the dates of December 3 and 4, 2020 for the annual conference at the Sheraton Portsmouth Harborside in New Hampshire.  We have the venue reserved and will soon be convening the Planning Committee.

Realistic view:  It’s difficult to tell what the future of in-person meetings will be.  Additionally, some  attendees may not be able to travel to out-of-state meetings for a while, given the impact of the pandemic on budgets.  Many organizations are turning to virtual conferences, which might be an option for NERGG.  If any of you attend a day-long virtual event that you think was particularly well-run, please let me know.  I’d love to contact the organizers and learn from their experience.

SPONSORS AND EXHIBITORS

I’d like to offer a word of thanks to sponsors, exhibitors, and allied organizations who have supported NERGG in the past and who have reached out to me during this time of isolation.  Several of them have offered to collaborate on webinars and to continue to support NERGG in any way they can.  We truly are all in this together.

Cindy

Cynthia L. Ingham, RN, BSN
Executive Director
NERGG, Inc.
director@nergg.org