Health and Safety First: COVID-19 and the NF Network Policy
Author: Kim Bischoff, Executive Director
Published On: 03/31/2020
UPDATE - Genetic Alliance hosts webinar on coronavirus vaccines, presented by Dr. Francis Collins, Director of the NIH - February 24, 2021
In a webinar presented by the Genetic Alliance, "Francis Collins, Director of the National Institutes of Health, shares with us why it is critical that individuals living with chronic diseases and conditions receive the coronavirus vaccine. He describes the scientific evidence for the safety and efficacy of the vaccine and why it is important to get vaccinated when it is your turn."
Watch the recording by clicking the photo below:
UPDATE - Helpful Links and Resources from the National Institutes of Health (NIH) - December 7, 2020
Dr. Francis Collins, Director of the NIH, has recently shared the launch of a central web portal called Combat COVID, coordinated by The Department of Health & Human Services (HHS) with NIH and Operation Warp Speed. The portal is a one-stop resource to help members of the public and doctors find information about different stages of COVID-19 illness, NIH-supported COVID-19 prevention and treatment clinical trials, and locations to donate plasma.
The website provides clear and easy-to-understand information for:
- People who have never had COVID-19 who may be interested in joining a vaccine or other prevention trial
- People who have COVID-19 and want to participate in a treatment clinical trial
- People who have recovered from COVID-19 who may be interested in donating plasma
Please visit combatCOVID.hhs.gov to learn more and share this information with friends, family, and peers. As always, we at the NF Network are here to answer your questions and help provide resources and answers to your questions. Do not hesitate to reach out at email@example.com or 630-510-115. We continue to wish you good health and safety during these uncertain times!
UPDATE - Concerns About the Novel Coronavirus COVID-19 and Neurofibromatosis - April 20, 2020
In light of the COVID-19 pandemic, there are concerns in our NF community about the potential impact the novel coronavirus COVID-19 could have on those affected by neurofibromatosis. For now, the best advice from NF specialists is to follow guidance issued for everyone to minimize exposure to the virus. If particular questions arise related to their condition, persons with NF should contact their NF specialist. For our full statement on the connection between COVID-19 and neurofibromatosis, please click here.
The NF Network continues to work daily to provide our services and fulfil our mission to the NF community. We are still here to answer any questions or concerns that may arise. Please contact us at firstname.lastname@example.org or leave us a message at 630-510-1115 and we will return your call promptly.
During these difficult times, it’s important to lean on the people you trust and care about. The Neurofibromatosis Network is committed to the health and well-being of everyone in our NF community and are still here to support, provide hope, and build NF community. To ensure the safety of our colleagues and loved ones, NF Network staff are working remotely from our homes and continue to provide our services to you. We are here for you, and we thank you for being here for us.
There are several useful and popular links on our site that provide both educational resources and additional information to connect with others in your NF community. Click the links below to learn more:
- Basic information about NF
- Find an NF doctor
- Find a local NF group
- Join a regional Facebook group
- Connect with others worldwide
- Follow us on Facebook for NF news and updates
Amid ongoing concerns about the novel coronavirus COVID-19, the NF Network has made the difficult decision to indefinitely postpone the NF Hope Concerts being held in Chicago on March 29th and New York City on May 4th. We share this news with a heavy heart, and take the safety of our staff, NF community, patrons, and performers very seriously. At this time, Las Vegas’ 10th Annual NF Hope Concert is still scheduled to take place on Sunday, October 18th.
As of now, our upcoming NF Coffee Chats are being moved to virtual hangouts to protect our NF community and still offer the option to connect with our communities online. Our upcoming #NFStrong 5K in Bradenton, FL has been rescheduled for Saturday, September 26th and our #NFStrong 5K in Kansas City, MO will be moving to the fall with a final date to be determined. The rest of our #NFStrong 5K's are currently still scheduled to take place as planned. If anything were to change, we will notify you via email, social media, and the NF Network website. If you have any questions or concerns regarding upcoming events, please contact Breanna Bronowski-Stutsman, Marketing and Event Coordinator, at email@example.com or 630-510-1115.
Like all of you, we are sorry that our community is in this unique situation, and we hope it will be resolved soon. Please feel free to contact us at firstname.lastname@example.org or leave us a message at 630-510-1115 and we will return your call promptly.
#MyHope4NF is that the NF community stays safe during this pandemic.
Stay safe and stay well,