Continuity of Care – COVID19 Financial Assistance Program

As a Global Genes RARE Foundation Alliance member, the ALGSA has received a Continuity of Care RARE Patient Impact Grant. Global Genes has launched this program to assist members of the rare disease community with expenses accrued as a result of COVID19 .

ALGS families may apply for Continuity of Care Financial Assistance by following the guidelines listed below. 

Continuity of Care Financial Assistance Guidelines

  • Continuity of Care is currently available for ALGS families with a maximum request of $1,000 in the form of payments for third party bills, resource materials consistent with continuation of care, or a combination of these
  • Once the maximum cumulative amount of $10,000 is met, we will no longer be able to fulfill the remaining requests
  • Applications for Continuity of Care accepted at any time and paid on a first-come, first-served basis, based on need assessed by the ALGSA Board of Directors
  • Anyone currently receiving treatment for Alagille Syndrome OR any parent/caregiver of a child currently receiving treatment for Alagille Syndrome may apply for Continuity of Care
  • You may apply as many times as needed however, a family will be awarded Continuity of Care a maximum of one time
  • The ALGSA makes payments ONLY to third party service providers, and payments may ONLY be sent to U.S. addresses 
  • Continuity of Care products may be delivered to international families
  • The third party bill(s) or screenshots of requested materials MUST accompany this application 
  • Limit of $1,000 per application with a maximum of $1,000 awarded per family
  • Please do not submit bills in excess of $1,000 unless you have verified the third party service provider will accept a partial payment
  • A CaringBridge page, other public social media page, letter from physician or case worker on letterhead or a medical eligibility form from the physician will be required for verification

Continuity of Care Areas of Assistance

*Total of Assistance may not exceed $1,000 per family.

  • Home: rent/mortgage, utilities/electric
  • Education: textbooks, homeschool supplies, electronics/wi-fi, sensory toys
  • Self Care: mental health costs, electronics/wi-fi for communications and/or telehealth

*All requests will be considered even if request does not fall into the categories above.*

Please complete the application form below to receive consideration for Continuity of Care assistance.

Thank you to Global Genes for supporting the Alagille Syndrome community!


View ALGSAssistance Continuity of Care Application form

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