COVID-19 Histio Hub
The health and safety of you and your family – our Histio Community – is of utmost importance to us. We have been closely monitoring the developments of the coronavirus (COVID-19) as well as the professional advice being released by different health agencies across the globe, such as the Centers for Disease Control and Prevention (CDC) in the United States and the World Health Organization (WHO). We are also working closely with the medical leadership of the Histiocyte Society, the leading experts in histiocytic disorders globally, to help provide more histio-related information to you as soon as it is available. We have created this information hub to help you navigate your way through COVID-19. Information and links will be regularly added to this hub. The areas include:
- Histio Community updates from our Executive Director, Deanna Fournier
- COVID-19 News from the CDC
- Medical Articles related to histiocytic disorders from reputable sources
- Resources on entertainment, families, children, mental health & wellness, education and more from around the internet
Our Commitment To You
As we navigate this global crisis together, the Histiocytosis Association would like to reinforce our commitment to supporting the patients and families that make up the Histio Community that we serve and the generous donors that support us. We remain focused on our mission and you can be assured that although things will continue to change in the coming days/weeks, our resources and support for you will remain a constant.
In the midst of coronavirus/COVID-19, there are many resources available to help you navigate daily life as well as larger concerns. On this page, you’ll find an RSS newsfeed from the Centers for Disease Control and Prevention (CDC) and news articles addressing histiocytic disorders or related information from reputable sources. The linked pages are for informational purposes only and is not medical advice. Be sure to talk with your medical team about any questions or concerns you may have about your specific situation. If you’ve found a trusted resource that you have found helpful, we encourage you to share it with us by emailing it to info@histio.org for potential inclusion in this list.
Centers for Disease Control and Prevention News Feed
CDC COVID Data Tracker – Cases and Deaths by State
Variants of SARS-CoV-2, the virus that causes COVID-19, have been reported in many countries around the world. Learn more about the current variants of concern.
Federal staffing resources for health departments.
Frequently Asked Questions about v-safe
Get help using v-safe, the health checker for COVID-19 vaccinations.
CDC is aggressively responding to the global outbreak of COVID-19 and preparing for the potential of community spread in the United States.
COVID-19 Vaccine Information
- National Organization for Rare Disorders (NORD) COVID-19 Resource Center
- FDA COVID-19 Vaccines Information
- CDC COVID-19 Vaccines Information
- National Comprehensive Cancer Network (NCCN) COVID-19 and Cancer Patients
- National Comprehensive Cancer Network (NCCN) -NEW!- COVID-19 Updated Guidance (Jan 2022)
- British Society for Immunology statement on COVID-19 vaccines for patients who are immunocompromised or immunosuppressed
Histiocyte Society Medical Statement
Additional COVID-19 Medical Information
Bone Marrow Transplantation- Coronavirus (COVID-19) Information for Bone Marrow Transplantation and Immune Deficiency Patients – Cincinnati Children’s Hospital
- Study Provides Overview of COVID-19 and Cardiovascular Health – Contagion Live/ Infectious Diseases Today
- In the lab, St. Jude researchers uncover origins of deadly inflammation caused by the novel coronavirus – St. Jude
- Treatment of cytokine storm syndrome with IL‐1 receptor antagonist anakinra in a patient with ARDS caused by COVID‐19 infection: A case report – Wiley Online Library
- Focus on cytokine storm syndrome may be silver lining in COVID-19 – Healio Rheumatology
- JAK/STAT pathway inhibition sensitizes CD8 T cells to dexamethasone-induced apoptosis in hyperinflammation – Blood (American Society of Hematology)
- NIH COVID-19 Information – National Institutes of Health
- Rare Action Network COVID-19 Virtual Discussion Groups By State – NORD
- COVID-19 Navigator – Wondros
- Johns Hopkins University & Medicine Coronavirus Resource Center
- CDC Announces New Possible Symptoms – CDC
- FDA Authorizes First Test for Patient At-Home Sample Collection – FDA
- Coronavirus: What People with Cancer Should Know – National Cancer Institute
- Common Questions About the New Coronavirus Outbreak – American Cancer Society
- A Message to Patients With Cancer and Health Care Providers About COVID-19 – FDA Oncology Center of Excellence
- COVID-19 and Immunocompromised Patients: Guidance for Parents – Cincinnati Children’s Hospital Medical Center
- Rheumatologists: On the COVID-19 Front Line – MedPage Today
2020 Histio Town Hall on COVID-19
In the midst of coronavirus/COVID-19, there are many resources available to help you navigate daily life as well as larger concerns. We have created an on-going list below of resources that we’ve found or that have been shared with us. Please be sure to read the fine print on any of the linked pages as offers and situations may change without notice. If you’ve found a resource that you have found helpful, we encourage you to share it with us by emailing it to info@histio.org for potential inclusion in this list.
Education- Free Ivy League College Classes Online
- Explore National Parks with 360 Virtual Tours
- Amazon Future Engineer offers free and creative coding coursework
- National Emergency Library Archive of Books
- Stream Videos From Your Local Library
- Host a Netflix Party with Friends
- Watch Broadway Shows (Free Trial)
- Operation Story Time
- Kid’s Activities Blog – List of Free Subscriptions
- Free Audible Stories
- Free Online Toddler Frozen Dance Class
- NORD’s COVID-19 Relief Programs
- Free Medicine to Unemployed Patients from Bristol Myers Squibb
- $35 Insulin Co-Pay Available from Eli Lilly
- Find Assistance from Pfizer on medications
- Amgen Patient Assistance Programs
- Patients Rising Now List of Pharmaceutical Patient Assistance Programs for COVID-19
- NORD Launches Financial Assistance Program for Rare Disease Community Members Impacted by COVID-19
- Restaurant Employee Relief Fund
- Restaurant Workers’ Community Foundation
- United Way Community Response and Recovery Fund
- Disaster Distress Helpline
- Call 1-800-985-5990
- National Domestic Violence Hotlineexternal icon
- Call 1-800-799-7233 and TTY 1-800-787-3224
- National Alliance on Mental Illness (NAMI)
- Work in the time of corona
- Extroverts, Here’s How to Survive Social Distancing, According to an Introvert
- How to Stay Physically and Mentally Healthy While COVID-19 Has You Stuck at Home
- Federal Drug Administration (FDA) Oncology Center of Excellence
- Horizon Eliminates Cost-Sharing for Qualified In-Network Telemedicine Services
- Horizon Eliminates Cost-sharing Related to COVID-19 Testing and Evaluation
- Horizon Announces Initial Steps to Support Members Through COVID-19 Outbreak
While many of us are home doing our part to avoid large gatherings and practicing social distancing, the need to stay connected with our friends, family and the Histio Community is at the forefront of our minds.
Let’s face it, the kids are bored, the dog is bored, and we could all use a little distraction.
For many in our Histio Community, important life events have been put on hold, even cancelled.
Concerts and recitals, and sporting events, too.Science fairs, art shows, spelling bees and class trips.
Birthday parties, graduation, weddings, and fundraising events.
Whether you have a poem to recite, a craft to share, a song to sing, dancing, joke-telling – the possibilities are endless! Here is your “do-over”. Here’s your chance to share with us all. We would like to invite you to join us on the Histio Open Stage!