BPAN WARRIORS | Global Genes 2020 Continuity of Care RARE Patient Impact Grant
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.

Email address *
The Continuity of Care RARE Patient Impact Grant application will be open through November 5, 2020 or until all funding has been utilized. Limit one application per household. Aid currently available in amounts ranging from $200-$1,000.
Name (First and Last Name): *
Email: *
Phone number: *
Preferred method of contact: *
What is your physical mailing address? (Physical address, not email. This will only be used if you are selected to receive aid): *
Total number of people living in the household: *
Total number of people in the household living with rare disease(s) *
Approximate gross annual household income in US dollars. *
Language most commonly spoken in the house. *
Please identify qualifying BPAN child/adult: *
Age(s) of the person with the BPAN: *
Gender(s) of the person with BPAN. *
Race of person(s) with BPAN: *
Ethnicity of the person(s) with BPAN: *
Are the adult(s) in your household currently able to work? * *
Please tell us a little bit about yourself and your current financial circumstances. All answers provided will be kept strictly confidential.
Please outline the amount you are requesting and what it will be used for. Again, please be as specific as possible. This should be in a list form. (Example, $150 for electric bill, $100 for virtual OT session, $70 for masks and protective equipment, etc.) *
Please tell us how a financial contribution could help you or your family in these challenging times. Be as specific as possible. *
Is there anything else you would like us to know? *
In our efforts to increase awareness of our BPAN community and highlight the work of Global Genes, if you are selected as a grant recipient, would you be willing to share how the Continuity of Care RARE Patient Impact Grant Program helped your family? Participation is strictly voluntary and will not affect your eligibility for the Continuity of Care RARE Patient Impact Grant. *
APPLICATION SUBMISSION: By submitting this application for the Continuity of Care RARE Patient Impact Grant indicates you have read and that you agree to the Grant Program Guidance for Applicants. Applicant also understands that personal and confidential information received in the Continuity of Care RARE Patient Impact Grant application and distribution process will be collected and shared between BPAN Warriors and Global Genes. *
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