Connecting you to helpful resources

Maria, living with a rare disease

Maria, living with a rare disease

Maria, living with a rare disease

Patient & Caregiver Resources


The gene-therapy journey can be complex. Your Vertex ConnectsTM Care Manager can help make sure you have a clear picture of what lies ahead. You’ll also receive helpful tools and resources to support you at key points in the treatment process. These can be sent to you by email or mailed to your home—whichever you prefer.

Vertex Connects Brochure

Get an overview of how Vertex Connects can support you throughout your treatment journey



A group of patient educators for Vertex gene therapy stand side by side. A group of patient educators for Vertex gene therapy stand side by side. A group of patient educators for Vertex gene therapy stand side by side.

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Advocacy & Support Organizations

Community advocates can play an important role in connecting you to more information. Check out these key organizations for some ideas of where to turn for extra support. Please note that these organizations are not affiliated with Vertex and Vertex does not recommend any particular third-party resource. Keep in mind there may be other local groups and resources in your area.


General Organizations

National Organization for Rare Disorders (NORD)



American Society for Gene & Cell Therapy (ASGCT)



EveryLife Foundation for Rare Diseases



Be the Match (bone marrow transplant resources)*






Global Genes RARE Community



SCD Organizations



Sickle Cell Disease Association of America (SCDAA)



Sickle Cell Community Consortium (SCCC)
Sickle Cell 101

TDT Organizations



Cooley’s Anemia Foundation and School Kit



Thalassemia International Foundation



Centers for Disease Control and Prevention – Thalassemia


*The transplant journey has many similar steps to the gene-therapy journey. Resources and discussion guides about the transplant process may help provide more information.

Frequently Asked Questions

    How do I enroll in Vertex Connects?

    You and your healthcare provider will discuss if gene therapy is right for you. If you are prescribed a Vertex gene therapy, you will receive a Vertex Connects enrollment form. You and a loved one can fill out the form together. Once the form has been submitted, your Care Manager will review your information and reach out to officially welcome you to the program. A completed Vertex Connects enrollment form is needed to participate in the program and determine eligibility for certain program offerings. Please note that enrollment in Vertex Connects is not required to receive a Vertex gene therapy.

      What type of support can my Care Manager provide?

      Your Care Manager will be there with you throughout the treatment process. They will work closely with your treatment center on the logistics of your treatment journey, answer your questions, and share useful guides to help prepare you for each step. They will also spend time getting to know you so that they can provide meaningful support.

        How can I prepare myself or my loved one for the gene-therapy journey?

        Weighing your options and deciding on gene therapy is a big decision. It means making a commitment to yourself—and your future. One way to start preparing for the journey ahead is by building your support network. This can include family members and friends, peers from your community, and your healthcare team. Your Vertex Connects Care Manager can also be a source of support.