COVID-19 Resources
for SDS families and beyond

Governmental Resources

 
WHO (World Health Organization) COVID-19 Information

https://www.who.int/emergencies/diseases/novel-coronavirus-2019

CDC (US Center for Disease Control) COVID-19 Information

https://www.cdc.gov/coronavirus/2019-ncov/

US Government (CDC & Whitehouse) COVID-19 Information

https://www.coronavirus.gov/

Canadian Government

https://www.canada.ca/en/public-health/services/diseases/coronavirus-disease-covid-19.html

 

European Centre for Disease Prevention and Control: COVID-19 Information
with links to Country Specific Websites and Phone Numbers

https://www.ecdc.europa.eu/en/novel-coronavirus-china/sources-updated

Flyer: https://www.ecdc.europa.eu/sites/default/files/documents/covid19-leaflet-public-travellers-EC-en.pdf

 

General COVID-19 Resources


Taking care of kids during the COVID-19 pandemic

https://www.healthychildren.org/English/health-issues/conditions/chest-lungs/Pages/2019-Novel-Coronavirus.aspx

An example oh how to talk to children about the pandemic, while hearing and respecting them​

 
COVID-10: How to be safe and resilient 

A free course developed by Northeastern University. 
https://www.resilience-ed.org/

Aggregated public health resources related to COVID-19

https://covid19.healthcoms.org/

How to protect yourself during COVID-19 when your loved one can’t stay home

An article by Creakyjoints.org

https://creakyjoints.org/living-with-arthritis/coronavirus-precautions-high-risk-people-live-with-essential-workers

General educational videos 

 

 

 

SDS Specific and Related Resources

SDSF Live

Facebook Live (and recorded) sessions by the Shwachman-Diamond Syndrome Foundation

 
SDS UK: Guidance letter by the Medical Advisory Board and additional resources by the Trustees

https://www.sdsuk.org/s/SDSUK-COVID-Advice2-for-Website2.pdf

COVID-19 Back-to-school guidance by UT Southwestern physicians (via Children's Health)

https://www.childrens.com/covid-19/for-patient-families/back-to-school-guidance

AAMDS: The Aplastic Anemia and MDS International Foundation: Guidance for Bone Marrow Failure Patients to Protect Against Coronavirus (COVID-19)

https://www.aamds.org/education/covid-19

Complex Child Magazine: COVID-19 resources for medically complex children

https://complexchild.org/editions/covid-info/

French resources from IRIS (a primary immune deficiency organization)

http://www.associationiris.org/

Dental

Dental health and oral hygiene recommendations during COVID-19 pandemic

By dentists at Authority Dental
https://www.authoritydental.org/coronavirus-recommendations

Exercise

STRENGTHEN YOUR HYPERMOBILE CORE – FREE HOME MOVEMENT PROGRAM

Via the Ehler-Danlos Society
https://www.ehlers-danlos.com/covid-19-update/strengthen-your-hypermobile-core-free-home-movement-program/

American Heart Association: Choose Your Own Workout

https://www.heart.org/en/healthy-living/fitness/getting-active/create-a-circuit-home-workout

Mainstream gyms and programs online, free for a while

Mental Health

 

CDC (US Center for Disease Control) COVID-19 > Stress & Anxiety

https://www.cdc.gov/coronavirus/2019-ncov/daily-life-coping/managing-stress-anxiety.html

 

NAMI (National Alliance on Mental Illness): COVID-19 Resource and Information Guide

https://www.nami.org/getattachment/About-NAMI/NAMI-News/2020/NAMI-Updates-on-the-Coronavirus/COVID-19-Updated-Guide-1.pdf

Cancer Support Community: What Cancer Patients, Survivors, and Caregivers Need to Know About the Coronavirus

https://www.cancersupportcommunity.org/blog/2020/02/what-cancer-patients-survivors-and-caregivers-need

Parenting Support and Child Abuse Prevention

Staying Social Safely

 

The Mighty: Online Events during the COVID-19 crisis

https://themighty.com/2020/03/online-events-for-people-stuck-inside-during-coronavirus-outbreak/

 

Our Odyssey: Young Adult Virtual Meet-Up

(Connecting young adults impacted by a rare or chronic condition with social and emotional support in the hope of improving their quality of life.)

https://ourodyssey.org/virtual-meet-ups

Entertainment

IDEAS FOR WHEN HOUSEBOUND – COVID-19

Via the Ehler-Danlos Society
https://www.ehlers-danlos.com/ideas-for-when-housebound-covid-19/

Science & Medicine, Research & Development

Yale: An Illustrated scientific Overview (Video)

https://covid.yale.edu/media-player/4989/ 

COVID-19 Treatment and Vaccine Tracker

By FasterCures / Milken Institute:

https://milkeninstitute.org/covid-19-tracker

Americal College of Physicians: COVID-19 Information for Internists

https://www.acponline.org/clinical-information/clinical-resources-products/coronavirus-disease-2019-covid-19-information-for-internists

ASH: American Society of Hematology: COVID-19 Resources

https://hematology.org/COVID-19

Masks

 
CDC: Use of Cloth Face Coverings to Help Slow the Spread of COVID-19

https://www.cdc.gov/coronavirus/2019-ncov/prevent-getting-sick/diy-cloth-face-coverings.html

Make Masks: a website to coordinate hand-made cotton mask making and receiving (US)

https://www.makemasks2020.org/

Shwachman-Diamond Syndrome Alliance

To advance treatments and finding a cure for Shwachman-Diamond Syndrome.

Contact us:

Email: connect@SDSAlliance.org

Phone: +1-617-329-1838

Mail: PO Box 2441
          Woburn, MA 01888

Shwachman-Diamond Syndrome Alliance is a US based not-for-profit 501(3)c corporation, serving the global SDS community.

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