The Continuity of Care RARE Patient Impact Grant Program is an exclusive funding opportunity for rare patient support groups and RARE Foundation Alliance partner organizations. Global Genes seeks to fund projects that will make a tangible difference in the lives of rare patients and caregivers in the United States.
Through the generous support of Global Genes, BPAN Warriors is thrilled to announce the availability of grants to provide members of our BPAN community with financial assistance during these unprecedented times. The purpose of the Global Genes 2020 Continuity of Care RARE Patient Impact Grant is to provide quick access to emergency monies needed by applicant families and individuals living with BPAN during the COVID-19 pandemic.
Rare Impact Grant shall be utilized for direct patient assistance to support rare families in need with continuity of care during the COVID-19 crisis.
PRIORITY AREAS OF APPROVED FINANCIAL SUPPORT INCLUDE:
- Patient access to distance learning support (i.e. tutoring), telehealth*, psychosocial counseling services and career counseling resources (i.e. internet access, smart phone/tablet access, etc.). Examples include telehealth psychosocial counseling services, special education and distance learning teachers, homeschooling tools and resources, and career counseling services.
*Eligible telehealth and medical expenses that will be considered under the the Rare Impact Grant are strictly limited to those that are not otherwise covered under patient insurance plans and will be evaluated case-by-case to ensure that they adhere to the grant guidelines.
- Basic living expenses (Food, rent, utilities, transportation, and other essential recurring household bills) and transportation costs to medical appointments are also included.
- Childcare services related to maintaining work status and/or physical and mental health for parents and caregivers.
- Necessary items specifically related to pandemic protection such as masks, soap, cleaners, hand sanitizer, etc.
FUNDS MAY NOT BE UTILIZED FOR MEDICAL EXPENSES, INCLUDING MEDICAL BILLS, DENTAL BILLS, INSURANCE PREMIUMS, CO-PAYMENTS, DEDUCTIBLES, MEDICATIONS, ETC.
WHO IS ELIGIBLE:
This current funding is for BPAN patients and caregivers in the United States and internationally.
HOW FUNDING IS DISTRIBUTED:
Aid currently available in amounts ranging from $200-$1,000 per selected recipient (one per household). Awardees will be notified on a rolling basis. BPAN Warriors will notify recipients and dispense funds accordingly following each selection process. If you are awarded a grant, you will be notified via your preferred method of contact.
All complete applications will be reviewed and evaluated in a nondiscriminatory process involving the assessment of financial aid based on current need. Incomplete application will not be considered. Decisions about allocation of funds are at the sole discretion of BPAN Warriors Board of Directors
All Continuity of Care RARE Patient Impact Grants will be distributed to BPAN patients and families no later than November 20, 2020. Funding shall be utilized for direct patient assistance to support rare families with continuity of care during the COVID-19 crisis.
GRANT PROGRAM GUIDANCE FOR APPLICANTS:
Global Genes recognizes the unprecedented situation with COVID-19 and has modified the RARE Patient Impact Grant to directly provide resources supporting the urgent needs of patient families who currently care for a child/adult diagnosed with BPAN and are in need of immediate financial help.
If selected for a Continuity of Care RARE Patient Impact Grant, recipient agrees to:
- Provide itemized accounting of expenses to BPAN Warriors by December 1, 2020
- Provide receipts for covered expenses to BPAN Warriors by December 1, 2020
- Limit use of grant funding to approved expenses outlined above
The grant recipient(s) shall comply with the grant reporting requirements that are part of the Grant Program Guidance for Applicants that include sharing of personal information received in the grant application and grant distribution process with Global Genes (GG) and affiliate funding partners. Grant recipients will provide all information requested outlined under the Grant Program Guidance for Applicants by December 1, 2020.
CONFIDENTIAL INFORMATION:
Both BPAN Warriors and Global Genes agree that any information received in the Continuity of Care RARE Patient Impact Grant application and distribution process relating directly to personal information of patients who are given support will be treated in full confidence and will not be revealed to any other persons, firms or organizations. Any public outcomes reporting will be provided in aggregate formats only to protect the privacy of vulnerable rare patients and their families.
QUESTIONS OR CONCERNS:
Please direct any questions or concerns related to the Continuity of Care RARE Patient Impact Grant application and distribution process, use of funds or other general questions to
race@bpanwarriors.org or contact BPAN Warriors at 561-706-0310.