PKD-Free Babies Funding Grant

Amount: Up to $3,000 for PGT-M only; Up to $9,000 for combined PGT-M and IVF. Ranges from $3,000 - $9,000 on a case-by-case basis.

Purpose: Cover uninsured costs of preimplantation genetic testing for monogenic disorders (PGT-M) and, for qualified individuals impacted by PKD, costs associated with in vitro fertilization (IVF) that are not covered by insurance.

Geographic Scope

• PGT-M funding: Available to those who reside in the 50 U.S. states or Canada
• IVF funding: Only available for U.S. residents

Eligibility

• Individuals or families impacted by polycystic kidney disease (PKD)
• Must have confirmed or suspected PKD diagnosis
• Genetic testing may be required to confirm diagnosis and develop PGT-M testing
• Limit: One grant per eligible family (covers both PGT-M and IVF/PGT-M combined)

What the Grant Covers

• Uninsured costs of PGT-M services
• Uninsured costs of IVF services
• Funds are paid directly to providers

Additional Benefits

• 10% discounts from allied Genetic Laboratories for approved applicants
• 20% discount from allied Fertility Clinics for approved applicants (if they choose to work with those facilities)

Important Terms

• Usage Timeline: One year from the date the grant approval is sent for signature to utilize funds (for IVF and PGT-M combined grants). No set timeline for PGT-M-only grants once approval is issued.
• Insurance Coverage: PKD-Free will cover costs once insurance benefits have been exhausted and patient is required to pay out of pocket
• Patient Autonomy: Applicants are not required to work with clinics affiliated with the Alliance
• Upfront Costs: Many genetic companies require full payment before services begin; reimbursement may be available once final embryo counts are confirmed

Contact Information

PKD-Free Alliance

• Email: helpingfamilies@pkdfree.org
• Address: 695 Merrick Ave Apt 445, Westbury, NY 11590
• Organization Type: Registered 501(c)(3), EIN 87-1389001

Background

• Mission: Support families seeking to end PKD in their families through genetic testing of embryos to prevent inheritance of PKD
• Formerly known as the pkDO Foundation

Application Process

1. Provide Application Information: Complete and submit a grant application with information about your journey and circumstances
2. Required Information: The application requests:
   • Personal/family information
   • PKD diagnosis details
   • Information about your genetic testing status
   • Financial/insurance information related to PGT-M and/or IVF costs
3. Submission: Submit application through the online form on the pkdfree.org website
4. Questions: If you have questions about the application, email helpingfamilies@pkdfree.org

Diagnostic Requirements

• If you or your partner have a suspected PKD diagnosis, genetic testing is recommended to confirm the diagnosis and meet grant eligibility
• Alliance staff can provide information about genetic testing options, including Natera's Renasight™

Supporting Documents

While not explicitly listed, applicants should be prepared to provide:

• Evidence of PKD diagnosis or genetic testing results
• Insurance coverage information for PGT-M and/or IVF
• Cost estimates from fertility clinics and genetic testing companies
• Documentation of out-of-pocket expenses