The following is an evolving list of helpful and informative resources for the #IStayHomeForRare community. If you have anything you would like to contribute, please contact us.

 

Reading lists:

 

Our Own Living in the Light Annotated Bibliography - a comprehensive list of books and informative reading focused on bridging the fields of patient advocacy and narrative medicine.

Rare Disease and COVID-19

 

NORD COVID-19 Critical Relief Program. Email: COVID19assistance@rarediseases.org

Message from NORD (National Organization for Rare Disorders) for rare and orphan disease communities during COVID-19.

Report back from NORD’s March 31 webinar through Pompe Disease news.

Global Genes has compiled an extensive list of resources specific to supporting families and their needs during COVID-19.

The Patient Advocate Foundation COVID-19 Resource Guide - A categorically organized list of resources during pandemic for patients.

 

Haemoglobin Disorders and Covid-19 Guide by Thalassemia International Federation. Specific resources and advice for thalassemia and SCD patients during COVID-19.
 

National Hemophilia Foundation webinar on insurance issues during COVID-19.

 

Cooley’s Anemia Foundation’s COVID-19 Resource guide for people with Thalassemia.

FDA updates on national blood supply

 

The MPS Society COVID-19 Support Page - online webinars for MPS and ML affected families.

 

Parent Project Muscular Dystrophy COVID-19 support page: includes webinars, news from FDA, updates from companies on clinical trials.

 

Cure SMA Community Assistance Program - fund to help families with SMA.

MDA resource page - for families with neuromuscular disorders during pandemic.

 

Batten Disease Family Association (UK) - COVID-19 page for Batten families

Clinical Trials

Lead site for info on clinical trial locations and enrollment details https://clinicaltrials.gov/
 

FDA guidance for Clinical Trials during COVID-19 - Summary here
 

American Society of Gene and Cell therapy postponed their 23rd annual meeting, but is still planning on hosting it virtually. 

 

Preparedness and Mutual Aid

The Disabled Person’s Guide to Stimulus Checks It is what it says it is. This is a blog post from the blog How to Get On, which focuses on providing resources and community for people in the US who are on or applying for disability.

Half Ass Disabled Prepper: Survival Guide to a Coronavirus Quarantine by Leah Lakshmi Piepzna-Samarasinha. Disability justice activist’s guide for self-care and prep during quarantine, with a special focus on resources for indigenous, LGBTQI+, working-class, survivors, and people of color. 

 

Safety Practices for Mutual Aid by the Mutual Aid Disaster Relief Collective - basic tips from folks who have been actively working in disaster zones for the last decade on advice on how to communicate and provide mutual aid safely. It’s a good primer for the concept of mutual aid during this crisis.

 

NIH 3D printer PPE files - if you have access to a 3D printer and want to make masks

 

How to make a facemask, no sewing required - article recently published in the Guardian

 

Discrimination during COVID-19

 

No Body is Disposable - initiative to stop descrimination in triage procedures during COVID-19 pandemic. Also see #nobodyisdisposable on social media.

AMA Code of Medical Ethics: Guidance in a pandemic. Guide to making ethical decisions, as recommended by AMA, during a pandemic. 

Medical Procedures that Violate Civil Rights (2012) From the National Disability Rights Network. 

Disability Rights Washington’s Complaint to Office of Civil Rights Concerned with members of different disabled communities being turned away from care in light of COVID-19 “care guidelines” that sideline the elderly and sick—or disabled—from getting care.

Propublica article about Washington state and Alabama’s COVID-19 hospitalization guidelines which sideline people with I/DD (intellectual/developmental disabilities) as well as physical disabilities. 

Disability Rights CA (California) letter to governor for protection - includes a list of very necessary demands for people living with disabilities in California to have access during a pandemic.

In Crowded Hospitals: Who will get Life Saving Equipment - article from Wired magazine about the overall situation.

American Society for Bioethics and Humanities - group at the forefront of discussion around current bioethical concerns.

“I will not apologize for my needs” - this great opinion piece in NYT by Ari Ne'eman. Requires a subscription to view.

Duty to Plan - from National Academy of Medicine. A scholarly paper that outlines ethical guidelines and makes suggestions for new ones during pandemic.

 

Podcasts

Two Disabled Dudes  

Insightful, authentic and humorous conversations about living beyond our circumstances, no matter what those may be. Sean and Kyle are both affected by a rare disease called Friedreich’s ataxia (FA).

Rare in Common 

Rare in Common is a podcast about the unique stories of people affected by rare disease. Hosted by Andra Stratton, a rare disease advocate, who speaks with different members of the rare disease community, including patients, caregivers, healthcare professionals, and researchers.

Resources

The people and families featured in this site have all given their direct consent and permission to do so and are not the direct recipients of donated funds. They are however eligible to apply and to be selected through a nondiscriminatory process. 

The information provided in this site is for educational purposes only and is not intended to replace discussions with a healthcare provider. The information in this site does not constitute legal or medical advice of any kind.

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