COVID-19 Related Resources - Desmoid Tumor Research Foundation

COVID-19 Related Resources

Resources from The National Organization for Rare Disorders (NORD)

Access the NORD COVID-19 Resource center here.


The National Organization for Rare Disorders (NORD) recently opened 2 COVID-19 Relief programs.

The COVID-19 Premium & Medical Relief Program

  • Provides financial assistance for certain out-of-pocket costs associated with patient’s health insurance premiums
  • Provides eligible uninsured and under-insured patients (for whom insurance has declined coverage for this expense) with financial support for out-of-pocket limited medical expenses such as:
    • Medical visits & telehealth consults
    • Laboratory & diagnostic testing
    • Physical and/or occupational therapy and/or other physician prescribed therapy
    • Durable medical equipment
    • Medical supplies (tube feeding supplies, dressing kits, personal protective equipment)

Read more here


A second program, the COVID-19 Critical Relief Program, provides support to rare disease patients and families facing financial challenges in affording critical, non-medical expenses.

Through this new program, NORD will provide financial assistance to eligible patients impacted by the COVID-19 pandemic, with financial assistance for unexpected or emergency, essential expenses such as:

  • Unexpected utility expenses
  • Communication expenses (e.g. phone, cell phone, internet)
  • Emergency repairs to car, furnace, home or major appliances
  • Assistance with travel and/or lodging logistics and expenses
  • Rent or mortgage payment assistance
  • Support for adaptive learning during school closures

Read more here


Assistance may only be provided in one NORD COVID-19 Assistance Program: Critical Needs OR Premium & Limited Medical Assistance.

Eligibility requirements for both NORD programs:

  • Patients must have a confirmed rare disease diagnosis
  • Individuals must be US citizens or provide documentation of permanent US residency status; or resident of the United States for at least six months. Applicants must be willing to provide proof of residency such as a utility bill indicating their name and address
  • Applicants must meet financial eligibility criteria (at or below 400% of the Federal Poverty Level guidelines (FPL) or demonstrate financial impact/mitigating circumstances due to the COVID-19 pandemic (examples include job loss, inability to work due to stay-at-home orders, school closures etc.)
  • The need for which assistance is being sought must meet the critical needs, non-medical essential criteria


Those who wish to be considered for eligibility need to reach out to NORD at 203.242.0497 or and provide the following:

  • Full name
  • A phone number where they can be reached
  • The rare disease with which they/their family member has been diagnosed
  • The direct manner in which they have been impacted by the COVID-19 crisis


It may be several days before NORD is able to reach out but please be assured that they will contact each individual seeking assistance through this program.




Resources from The Desmoid Tumor Research Foundation

Dr. Breelyn Wilky discusses considerations for desmoid tumor patients during the pandemic.



Resources from The Sarcoma Foundation of America

The Sarcoma Foundation of America hosts a panel of sarcoma specialists discussing sarcoma and coronavirus.



U.S. Centers for Disease Control

To access the most recent information on COVID-19 (aka: coronavirus), we recommend referencing the following websites:

U.S. Centers for Disease Control – Coronavirus

People Who Are At Higher Risk For Severe Illness

Preventing Infections in Cancer Patients



The World Health Organization (WHO)

World Health Organization – Coronavirus