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ALGSAccess Program

Improving access to medications, supplements, and services is a priority need for families affected by ALGS. The ALGSAccess Program was created to combat private and government insurance denials for medical care, medications and supplements, equipment, and other needs. Through this program, patients can receive support letters which aid in appealing for approval of VA services, disability, and other needs where related to Alagille Syndrome. If you have questions or need to talk through a denial of coverage, please connect with us via the contact for to the right.

 

HealthWell Foundation

HealthWell’s Alagille Syndrome Vitamins and Supplements Fund is designed to assist eligible people living with Alagille Syndrome with the full or partial cost-shares associated with vitamins and supplements. We are committed to supporting the ALGS community and the established guidelines around our covered product list are meant to focus on the areas of greatest need for the majority of people living with Alagille Syndrome. Please visit HealthWell’s website to locate the vitamins and supplements in the covered product list and the qualifications to enroll.

Medication Access Patient Program (MAPP)

We are proud to announce the launch of the Medication Access Patient Program (MAPP), created to help patients and families in South America affected by Alagille Syndrome with some out-of-pocket expenses for medications, vitamins, supplements, and formulas essential to their Alagille Syndrome related care.

Thank you to Tanner Pharma Group’s guidance and support in helping us develop this new and exciting program designed to help improve medication accessibility for patients who truly need it. 

“We commend the Alagille Syndrome Alliance for their dedication and perseverance in developing an innovative program to address barriers to the access of essential medicines for Alagille syndrome patients. When there is a will, there is a way, and we look forward to continuing to support their mission to help patients get the medicines they need.”

– Rob Keel, Executive Vice President, Tanner Pharma Group

“Through the extraordinary efforts of expanding our programs and services internationally, we have built an amazing base of families in South America and have come to more deeply understand the challenges and hardships they face geographically, financially, and economically. We have watched families suffer from medication access issues for many years for reasons mostly outside of their control. We are honored to have had Tanner Pharma Group’s guidance and support through the development of this outstanding program and we look forward to helping families in this direct and very meaningful way.”

– Roberta Smith, President, Alagille Syndrome Alliance.

To apply, patients or caregivers will download, print, and complete the MAPP Waiver and Application form and return it to mapp@alagille.org.

Only available for patients and families living in Brazil at this time.

MAPP Program
  • Patient Information
  • List Of Medications
  • Privacy Disclosure Signature
  • Application Signature

By signing this Application and Waiver Form, I, in accordance with the law, declare that:

Ao assinar este Formulário de Solicitação e Isenção de responsabilidade, declaro, sob as penas da lei, que:

1. I am a patient and/or parent or legal guardian of a patient with Alagille Syndrome.

1. Sou paciente e/ou pai ou representante legal de um paciente com Síndrome de Alagille.

2. I hereby grant permission for the ALGSA to facilitate my access to the above medication(s) by manually entering my name (or the person I represent), CPF number, address, and prescription information to a public known online pharmacy within Brazil, in order for said medication(s) to be shipped to my home address. The ALGSA will cover the monetary portion of the order and its delivery at no cost to myself or my family up to the agreed upon amount of the program. Above the agreed upon amount, the patient/family will be responsible financially.

2. Por meio deste, concedo permissão à ALGSA para facilitar meu acesso ao(s) medicamento(s) acima, inserindo manualmente meu nome (ou da pessoa que represento), número do CPF, endereço e informações da receita médica em uma farmácia on-line publicamente reconhecida no Brasil, para que o(s) referido(s) medicamento(s) seja(m) enviado para o meu endereço residencial. A ALGSA cobrirá os custos com o pedido e sua entrega, sem qualquer  custo para mim ou minha família, mas dentro dos limits do programa. Qualquer gasto acima do previsto no programa, será de responsabilidade do paciente e/ou seu(s) responsável(is).

3. I am responsible for taking these medications or to administer them in accordance with the Prescription issued by the above-mentioned Doctor.

3. Sou responsável por tomar ou por administrar esses medicamentos de acordo com a Receita Médica emitida pelo médico supra mencionado.

4. I confirm I have received a prescription(s) for the above medications directly from a licensed physician and hereto attach a copy of said prescription(s) to this form for the medication listed above.

4. Confirmo que recebi uma receita(s) para os medicamentos acima diretamente de um médico registrado perante o CRM e anexo uma cópia da(s) referida(s) receita(s) a este formulário para os medicamentos listadosacima.

5.  I will keep the medication(s) safe and secure. If a(the) medication(s) is lost or stolen, I understand it may not be replaced until the end of the period mentioned in the prescription(s) I provided with this form.

5. Vou manter o(s) medicamento(s) em segurança e protegido(s). Se o(s) medicamento(s) for(em) perdido(s) ou roubado(s), estou ciente de que ele(s) não será(ão) ser substituído(s) até o final do período mencionado na(s) receita(s) apresentada(s) com este formulário.

6. I’m joining the program in good faith and will not sell any medication and/or share it with others, nor will I financially benefit from the program. I understand that if I do, the ALGSA and its affiliates reserve the right to take any action they deem necessary or appropriate, including stopping my participation in this Access Program without notice to me.

6. Aderi ao programa em boa-fé e não irei vender qualquer medicamento e/ou compartilhá-lo com outras pessoas, bem como não terei qualquer benefício financeiro através do programa. Entendo que, se o fizer, a ALGSA e suas afiliadas reservam o seu direito de tomar as medidas que acreditem ser necessárias, incluindo a interrupção de minha participação neste Programa de Doação sem qualquer notificação prévia para mim.

7. For purposes of protecting personal information, I provide ALGSA and its intermediaries with explicit consent to:

   a. Store all personal data requested in this Application and Waiver Form;

   b. Use and/or share personal data only in the context of this Donation Program.

7. Para fins de proteção de informações pessoais, forneço à ALGSA e seus intermediários consentimento explícito para:

   a. Armazenar todos os dados pessoais solicitados neste Formulário de Solicitação e Isenção;

   b. Usar e/ou Compartilhar dados pessoais apenas no contexto deste Programa de Doação.

8. I hereby hold harmless and release and forever discharge the ALGSA and Tanner Pharma Group from all claims, demands, liability and causes of action which I, my heirs, representatives, executors, administrators, or any other persons acting on my behalf or on behalf of my estate have or may have by reason of this form and authorization, or any issue directly or indirectly related to it.

8. Por meio deste formulário, isento de responsabilidade e exonero, para sempre, a ALGSA e Tanner Pharma Group de todas as reivindicações, demandas, responsabilidades e causas de ação/pedir que eu, meus herdeiros, representantes, inventariantes, administradores ou quaisquer outras pessoas que atuem oi venham atuar em meu nome ou em nome de meu espólio tenham ou possam vir a ter em razão deste formulário e autorização ou questão a ele relacionada, mesmo que indiretamente.

9. By signing this form, I understand that the ALGSA and Tanner Pharma Group, other than in the context of this Access Program, will not release my information to any other nonprofit and/or commercial entity without seeking my permission.

9. Ao assinar este formulário, entendo que a ALGSA e Tanner Pharma Group, salvo no contexto deste Programa de Doação, não divulgará minhas informações a nenhuma outra entidade sem fins lucrativos e/ou comercial sem solicitar minha permissão.

 

Privacy Disclaimer

 

Isenção de responsabilidade de privacidade

The personal information provided through this form shall be collected and processed by Alagille Syndrome Alliance (“ALGSA”), an organization organized under the laws of the state of Oregon, USA and located at the address: PO Box 22 Collierville, TN 38027, in order to place an order(s) for the above-mentioned medications as per your request. Such personal data are not retained by ALGSA for longer than the time necessary to pursue the purposes set out above.

As informações pessoais fornecidas através deste formulário serão coletadas e processadas pela Alagille Syndrome Alliance (“ALGSA”), uma organização constituída sob as leis do Estado de Oregon, EUA e localizada no endereço: PO Box 22 Collierville, TN 38027, para fins de realizar o pedido(s) para os medicamentos acima mencionados conforme sua solicitação. Esses dados pessoais não são retidos pela ALGSA por mais tempo do que o necessário para prosseguir as finalidades acima definidas.

This authorization is continuous and may only be withdrawn/terminated by me upon specific request. I have read this Application and Waiver Form before signing below and I fully understand the contents, meaning, and impact of this form.

Esta autorização é contínua e só pode ser retirada/cancelada por mim mediante pedido específico. Li este Formulário de Inscrição e Isenção antes de assinar abaixo e compreendo totalmente o conteúdo, significado e impacto deste formulário.
Sign Here

 

Privacy Disclaimer

 

Isenção de responsabilidade de privacidade

The personal information provided through this form shall be collected and processed by Alagille Syndrome Alliance (“ALGSA”), an organization organized under the laws of the state of Oregon, USA and located at the address: PO Box 22 Collierville, TN 38027, in order to place an order(s) for the above-mentioned medications as per your request. Such personal data are not retained by ALGSA for longer than the time necessary to pursue the purposes set out above.

As informações pessoais fornecidas através deste formulário serão coletadas e processadas pela Alagille Syndrome Alliance (“ALGSA”), uma organização constituída sob as leis do Estado de Oregon, EUA e localizada no endereço: PO Box 22 Collierville, TN 38027, para fins de realizar o pedido(s) para os medicamentos acima mencionados conforme sua solicitação. Esses dados pessoais não são retidos pela ALGSA por mais tempo do que o necessário para prosseguir as finalidades acima definidas.

This authorization is continuous and may only be withdrawn/terminated by me upon specific request. I have read this Application and Waiver Form before signing below and I fully understand the contents, meaning, and impact of this form.

Esta autorização é contínua e só pode ser retirada/cancelada por mim mediante pedido específico. Li este Formulário de Inscrição e Isenção antes de assinar abaixo e compreendo totalmente o conteúdo, significado e impacto deste formulário.
Sign Here
Important Links

HealthWell Foundation Alagille Syndrome Vitamins and Supplements Fund: LINK

MAPP Application and Waver Form: LINK