Patient Assistance Grants

Patient Assistance Grants is sponsored by KCNQ2 Cure Alliance. Provides financial support for medical equipment and therapies not covered by insurance for individuals with KCNQ2-related encephalopathy.

Patient Assistance Grant Application - KCNQ2 Cure Alliance Patient Assistance Grants UNITY. HOPE. STRENGTH.

LOVE KCNQ2 CURE PATIENT ASSISTANCE GRANT The KCA Patient Assistance Grant program provides financial support for necessary medical equipment, therapy devices, and educational tools for individuals with KCNQ2-related encephalopathy not covered by private insurance or other programs. It is accessible globally to anyone with a confirmed diagnosis of a KCNQ2-related encephalopathy variant.

The application period begins annually on March 2nd on International KCNQ2 Awareness Day and ends on December 1st or when funding is exhausted. Applications are processed on a first-come, first-served basis. Each applicant is eligible to apply once per funding period, with a cap of $1,500 annually and a lifetime limit of $5,000.

KCA PATIENT ASSISTANCE GRANTS – QUALIFYING ITEMS Durable medical goods (such as wheelchairs, orthotics, cooling vests, etc.) Therapies not covered by insurance (such as therapeutic horseback riding, aquatic therapy, etc) Communication devices, such as iPads The program does not cover medical or pharmaceutical co-pays, respite assistance, or service animals.

If you are applying for an iPad, please note the PAG program only covers either an iPad (128GB, Wi-Fi only) or an iPad mini (256GB, Wi-Fi only). If you were granted funding for an iPad previously, there is a 3-year minimum before you may reapply for a new one. We do not provide AppleCare insurance, but you may add it later at your own cost.

We highly suggest you purchase a durable cover or add it to your application to help protect the device. If the equipment you are interested in is not listed above or you are requesting more than 3 items, please contact us with more details on the requested item, and we can review its eligibility.

Your application should contain: A filled-out application form A recent letter from a physician or healthcare provider detailing the medical need for your request A recent letter from a neurologist or geneticist confirming the diagnosis of KCNQ2-related encephalopathy If applicable, a denial letter from your insurance company for the requested items or services Any other relevant documents related to your request.

Privacy of all submitted information is assured. Incomplete applications, or those lacking required additional information, will be put on hold until completed. Applications not completed within 60 days will be considered expired.

All applicants will be notified via email regarding the outcome of their application. Those who are denied can reapply if they provide new documentation showing a change in their situation or the ineffectiveness of other alternatives. The review process for applications can take up to 45 days.

Questions or need help? Email info@kcnq2cure. org Application for Caregivers Have you previously applied for a grant from the KCNQ2 Cure Alliance?

(Required) State / Province / Region Afghanistan Albania Algeria American Samoa Andorra Angola Anguilla Antarctica Antigua and Barbuda Argentina Armenia Aruba Australia Austria Azerbaijan Bahamas Bahrain Bangladesh Barbados Belarus Belgium Belize Benin Bermuda Bhutan Bolivia Bonaire, Sint Eustatius and Saba Bosnia and Herzegovina Botswana Bouvet Island Brazil British Indian Ocean Territory Brunei Darussalam Bulgaria Burkina Faso Burundi Cabo Verde Cambodia Cameroon Canada Cayman Islands Central African Republic Chad Chile China Christmas Island Cocos Islands Colombia Comoros Congo Congo, Democratic Republic of the Cook Islands Costa Rica Croatia Cuba Curaçao Cyprus Czechia Côte d'Ivoire Denmark Djibouti Dominica Dominican Republic Ecuador Egypt El Salvador Equatorial Guinea Eritrea Estonia Eswatini Ethiopia Falkland Islands Faroe Islands Fiji Finland France French Guiana French Polynesia French Southern Territories Gabon Gambia Georgia Germany Ghana Gibraltar Greece Greenland Grenada Guadeloupe Guam Guatemala Guernsey Guinea Guinea-Bissau Guyana Haiti Heard Island and McDonald Islands Holy See Honduras Hong Kong Hungary Iceland India Indonesia Iran Iraq Ireland Isle of Man Israel Italy Jamaica Japan Jersey Jordan Kazakhstan Kenya Kiribati Korea, Democratic People's Republic of Korea, Republic of Kuwait Kyrgyzstan Lao People's Democratic Republic Latvia Lebanon Lesotho Liberia Libya Liechtenstein Lithuania Luxembourg Macao Madagascar Malawi Malaysia Maldives Mali Malta Marshall Islands Martinique Mauritania Mauritius Mayotte Mexico Micronesia Moldova Monaco Mongolia Montenegro Montserrat Morocco Mozambique Myanmar Namibia Nauru Nepal Netherlands New Caledonia New Zealand Nicaragua Niger Nigeria Niue Norfolk Island North Macedonia Northern Mariana Islands Norway Oman Pakistan Palau Palestine, State of Panama Papua New Guinea Paraguay Peru Philippines Pitcairn Poland Portugal Puerto Rico Qatar Romania Russian Federation Rwanda Réunion Saint Barthélemy Saint Helena, Ascension and Tristan da Cunha Saint Kitts and Nevis Saint Lucia Saint Martin Saint Pierre and Miquelon Saint Vincent and the Grenadines Samoa San Marino Sao Tome and Principe Saudi Arabia Senegal Serbia Seychelles Sierra Leone Singapore Sint Maarten Slovakia Slovenia Solomon Islands Somalia South Africa South Georgia and the South Sandwich Islands South Sudan Spain Sri Lanka Sudan Suriname Svalbard and Jan Mayen Sweden Switzerland Syria Arab Republic Taiwan Tajikistan Tanzania, the United Republic of Thailand Timor-Leste Togo Tokelau Tonga Trinidad and Tobago Tunisia Turkmenistan Turks and Caicos Islands Tuvalu Türkiye US Minor Outlying Islands Uganda Ukraine United Arab Emirates United Kingdom United States Uruguay Uzbekistan Vanuatu Venezuela Viet Nam Virgin Islands, British Virgin Islands, U.S. Wallis and Futuna Western Sahara Yemen Zambia Zimbabwe Åland Islands Child's Diagnosis (Required) (include primary and secondary, if applicable) Equipment Requested (Required) (Provide exact name of equipment/service; name of manufacturer or provider; and the name and contact information for the vendor.

If available, please attach brochure and/or photos. If you are requesting more than 3 items, please contact KCA prior to submission.) Estimated Cost (Required) Please research the cost of your item(s) before submitting your application.

An estimated cost must be entered, or your application will be rejected. Physician Letter (Required) Max. file size: 50 MB.

Proof of Diagnosis (Required) Max. file size: 50 MB. Insurance Denial Letter Max.

file size: 50 MB. Other Documentation Max. file size: 50 MB.

Liability Waiver (Required) I acknowledge I understand that by awarding these grants, KCA is making no recommendation to the appropriateness or safety of a particular piece of equipment or therapy in treating KCNQ2-related disorders or associated comorbidities. KCA and its staff and board are not responsible for the safety and use of awarded equipment or therapies.

Applicants are strongly urged to consult with their medical professionals and therapists regarding equipment and therapies that would be most beneficial for their situation. Confirmation Checkbox (Required) I acknowledge I acknowledge that I have researched the equipment requested. I understand that once any items are approved and ordered, they cannot be returned or exchanged for a different item.

Disclosure of Health Information (Required) I acknowledge The applicant confirms that they intend for KCNQ2 Cure Alliance (KCA) to be treated as they would be with respect to their rights regarding the use and disclosure of individually identifiable health information or other medical records.

It is the applicant’s intention to waive the requirement that KCA be given only the "minimum necessary" information, and it is the express intent that KCA shall have full and unfettered access to any and all information that the applicant provides personally or via any other personal representative.

This release authority applies to any information governed by the Health Insurance Portability and Accountability Act of 1996 (aka HIPAA), 42 USC 1320d and 45 CFR 160-164.

This Authorization to Disclose Health Information is intended to be a "valid authorization", as that term is used in the Health Insurance Portability and Accountability Act of 1996, as amended, and in regulations promulgated thereunder, including, without limitation, 45 C. F. R.

§164. 508, or any successor regulatory provision. This authorization shall terminate on the first to occur of: (1) One (1) year after application to the KCA Patient Assistance Program; or (2) Upon my written revocation actually received by the KCA.

Proof of receipt of my written revocation may be by certified mail, registered mail, facsimile, or any other receipt evidencing actual receipt by the covered entity. This revocation shall be effective upon the actual receipt of the notice by the covered entity except to the extent that KCA has taken action in reliance on this Authorization.

By checking this box for Authorization, the applicant acknowledges that the information used or disclosed pursuant to this authorization may be subject to re-disclosure by the person or persons named in this authorization, and the information, once disclosed, will no longer be protected by the rules created in HIPAA.

The applicant understands that although federal law does not protect health information disclosed to someone other than another health care provider, health plan, or health care clearinghouse, under Colorado law, all recipients of health care information are prohibited from re-disclosing such information except as specifically required or permitted by law.

The applicant understands they have the right to receive a copy of this authorization upon request. Your KCNQ2 Currants Grant application has been received.

Our current timeline for review is as follows: LOI Decision: 2-3 weeks from receipt Full Proposal Due: Within 3 months of invitation Scientific Review: 4-5 weeks Committee Review: 2 weeks Applicant Notified: 5 days after review Your Email Address (Required) This field is hidden when viewing the form State / Province / Region Afghanistan Albania Algeria American Samoa Andorra Angola Anguilla Antarctica Antigua and Barbuda Argentina Armenia Aruba Australia Austria Azerbaijan Bahamas Bahrain Bangladesh Barbados Belarus Belgium Belize Benin Bermuda Bhutan Bolivia Bonaire, Sint Eustatius and Saba Bosnia and Herzegovina Botswana Bouvet Island Brazil British Indian Ocean Territory Brunei Darussalam Bulgaria Burkina Faso Burundi Cabo Verde Cambodia Cameroon Canada Cayman Islands Central African Republic Chad Chile China Christmas Island Cocos Islands Colombia Comoros Congo Congo, Democratic Republic of the Cook Islands Costa Rica Croatia Cuba Curaçao Cyprus Czechia Côte d'Ivoire Denmark Djibouti Dominica Dominican Republic Ecuador Egypt El Salvador Equatorial Guinea Eritrea Estonia Eswatini Ethiopia Falkland Islands Faroe Islands Fiji Finland France French Guiana French Polynesia French Southern Territories Gabon Gambia Georgia Germany Ghana Gibraltar Greece Greenland Grenada Guadeloupe Guam Guatemala Guernsey Guinea Guinea-Bissau Guyana Haiti Heard Island and McDonald Islands Holy See Honduras Hong Kong Hungary Iceland India Indonesia Iran Iraq Ireland Isle of Man Israel Italy Jamaica Japan Jersey Jordan Kazakhstan Kenya Kiribati Korea, Democratic People's Republic of Korea, Republic of Kuwait Kyrgyzstan Lao People's Democratic Republic Latvia Lebanon Lesotho Liberia Libya Liechtenstein Lithuania Luxembourg Macao Madagascar Malawi Malaysia Maldives Mali Malta Marshall Islands Martinique Mauritania Mauritius Mayotte Mexico Micronesia Moldova Monaco Mongolia Montenegro Montserrat Morocco Mozambique Myanmar Namibia Nauru Nepal Netherlands New Caledonia New Zealand Nicaragua Niger Nigeria Niue Norfolk Island North Macedonia Northern Mariana Islands Norway Oman Pakistan Palau Palestine, State of Panama Papua New Guinea Paraguay Peru Philippines Pitcairn Poland Portugal Puerto Rico Qatar Romania Russian Federation Rwanda Réunion Saint Barthélemy Saint Helena, Ascension and Tristan da Cunha Saint Kitts and Nevis Saint Lucia Saint Martin Saint Pierre and Miquelon Saint Vincent and the Grenadines Samoa San Marino Sao Tome and Principe Saudi Arabia Senegal Serbia Seychelles Sierra Leone Singapore Sint Maarten Slovakia Slovenia Solomon Islands Somalia South Africa South Georgia and the South Sandwich Islands South Sudan Spain Sri Lanka Sudan Suriname Svalbard and Jan Mayen Sweden Switzerland Syria Arab Republic Taiwan Tajikistan Tanzania, the United Republic of Thailand Timor-Leste Togo Tokelau Tonga Trinidad and Tobago Tunisia Turkmenistan Turks and Caicos Islands Tuvalu Türkiye US Minor Outlying Islands Uganda Ukraine United Arab Emirates United Kingdom United States Uruguay Uzbekistan Vanuatu Venezuela Viet Nam Virgin Islands, British Virgin Islands, U.S. Wallis and Futuna Western Sahara Yemen Zambia Zimbabwe Åland Islands This field is hidden when viewing the form KCNQ2 Connection Parent/Primary Caregiver Other family member I have KCNQ2-RD Clinician Researcher