ONWARD® is a personalized support experience for caregivers and patients living with thymidine kinase 2 deficiency (TK2d) who are being treated with KYGEVVI. With ONWARD, you’ll be paired with a dedicated Care Coordinator* who will provide support tailored to your needs and the needs of your loved one.
ONWARD provides information about potential financial assistance options as well as access to practical, educational, and self-advocacy tools. With these resources, you can feel confident that ONWARD is here to support you throughout the prescribed treatment journey.
ONWARD Care Coordinators do not provide medical advice and will refer you to your healthcare professional for any questions related to your treatment plan.
ONWARD provides resources to support caregivers and patients during prescribed treatment with KYGEVVI.
Affordability and access are always important when talking about rare disease treatment. Your Care Coordinator can help you step-by-step – empowering you to make informed decisions moving forward. Your ONWARD Care Coordinator will:
- Review your insurance coverage with you
- Work with our specialty pharmacy PANTHERx Rare (1-855-726-8479) to keep you informed about your status in the approval process
- Explain available treatment access and financial assistance options, even if you’re uninsured
ONWARD offers education about TK2d, whether you are newly diagnosed or have had some experience living with TK2d. In addition to educational information from ONWARD, these advocacy groups may have helpful resources:
- International Mito Patients is an international organization that aims to improve the quality of life for people with mitochondrial diseases by fostering communication and collaboration across the world. Visit mitopatients.org.
- MitoAction works to improve the quality of life for people living with mitochondrial diseases and their families. Visit mitoaction.org.
- The Muscular Dystrophy Association provides support and resources for people living with neuromuscular diseases such as TK2d. Visit mda.org.
- The United Mitochondrial Disease Foundation promotes research and education for the diagnosis, treatment, and cure of mitochondrial diseases like TK2d. Visit umdf.org.
Starting treatment can be intimidating. ONWARD will provide resources to help as you or your loved one start and continue treatment on KYGEVVI, as prescribed:
Checklists to prepare for treatment
Help understanding what to expect from treatment with KYGEVVI
- Helping you fit this new treatment into your life
- Reminders to help you or your loved one start and stay on the prescribed treatment schedule
- Tips on self-advocating to help you share information about symptoms with your doctor
Work closely with you and our specialty pharmacy, PANTHERx Rare (1-855-726-8479), who will help you prepare for self-administration of KYGEVVI
Caring and advocating for a loved one with a rare disease isn’t always easy. ONWARD is designed to empower you by helping to address some of your concerns and offering you support.
- Tools for talking with others about TK2d and your loved one’s new treatment
- Ways to ask for help and share with others how they can offer support
- Information about caregiver support networks, such as:
- Caregiver Action Network: Working to improve the quality of life for tens of millions of family caregivers. Visit caregiveraction.org.
- National Alliance for Caregiving: Dedicated to building partnerships in research, advocacy, and innovation to make life better for family caregivers. Visit caregiving.org.
- Today’s Caregiver: A leading provider of information, support, and guidance for family and professional caregivers. Visit caregiver.com.
Materials designed specifically for caregivers of patients living with TK2d and treating with KYGEVVI
We understand that no two patients are alike and that each patient’s needs are unique. That’s why you’ll be assigned a dedicated Care Coordinator who is here to listen and help you.
After enrolling in ONWARD, you’ll be contacted by your ONWARD Care Coordinator.
Your Care Coordinator is:
- A credentialed medical professional with healthcare experience
- Professionally trained to understand your disease and treatment
- Dedicated to you and your loved one’s treatment experience
ONWARD Care Coordinators do not provide medical advice and will refer you to your healthcare professional for any questions related to your treatment plan.
From your first day, your Care Coordinator will be there to help you understand your prescribed KYGEVVI treatment. Throughout your prescribed treatment, your coordinator is available to listen and provide resources based on your unique needs. Your Care Coordinator can help with:
- Understanding insurance coverage
- Matching the needs of you and your loved ones to available support services
- Providing helpful information as you or your loved one starts and continues treatment with KYGEVVI, as prescribed
- Sharing information about TK2d and KYGEVVI
- Helping build communication and advocacy skills
- Staying in contact to provide support throughout your or your loved one’s treatment
- Our specialty pharmacy PANTHERx Rare will assist with oral solution preparation and administration support. They will contact you directly or you can reach them at 1-855-726-8479
After you enroll, your Care Coordinator will call you directly to begin providing personalized support and resources.
During your ONWARD experience, you or your loved one can contact your Care Coordinator Monday through Friday, 8 AM – 8 PM ET.
To sign up with ONWARD…
ASK your doctor to sign
you up.
DOWNLOAD a Start Form
and bring it to your doctor.
CALL 1-844-ONWARD-1
(1-844-669-2731) today.