2024 Team Titin mission and strategic goals

With the start of the New Year it’s time to consider our goals and mission. Read more for details.

Team Titin, Inc.’s mission is to serve those living with, caring for, or researching titin (TTN) related muscle and heart disorders. To achieve this mission, we focus on four key pillars: Connection, Advocacy, Care, and Research.


Connection is a key pillar of our mission. We aim to connect with and support affected individuals, parents, and caregivers, helping them navigate the complexities of TTN related disorders. In addition, we strive to connect with other organizations and stakeholders that support our mission, fostering a larger community and expanding our reach. Our efforts to connect also include providing information about titinopathy and sharing the latest research with the affected community. We understand that knowledge is power, and we believe in empowering our community with the most up-to-date, accurate information about these disorders. We use various tools to foster connection within our community. These include newsletters, online forums such as social media, webinars, YouTube videos, and this website. We also host conferences like SciFam, which provide a platform for individuals to share their experiences, learn from experts, and feel less alone in their journey.


Advocacy forms another crucial pillar of our mission. We serve as advocates for our community, amplifying and representing our collective voice. We believe in the power of unity and strive to ensure the needs and concerns of our community are heard and addressed. This advocacy extends to policy advocacy, where we push for changes that can help advance our mission. This includes pursuing an ICD code, which would facilitate better recognition and treatment of TTN related disorders.


While we seek a treatment for tomorrow, we are committed to helping affected individuals access the best care for today. This commitment to care is the third pillar of our mission. We work towards creating and disseminating care guidelines and updates on best care practices for TTN related muscle and heart disorders, providing a valuable resource for those dealing with these conditions.


The final pillar of our mission is research. We support, fund, and connect with researchers, clinicians, and other stakeholders in the field of TTN related disorders. Our goal is to support the search for a treatment and a better understanding of titinopathy.

Our research efforts include funding research through a peer-reviewed request for proposals process, and connecting with researchers globally. We also work to advance clinical trial readiness, including co-hosting our registry, the Congenital Muscle Disease International Registry (www.CMDIR.org). We attend global conferences like the World Muscle Society Congress or the MDA Scientific & Clinical conference to learn and connect with experts. We also co-host the biannual titin case conference/research update virtual meetings, which allow us to stay at the forefront of scientific advancements and share these developments with our community of experts. In addition, we support clinical trial recruitment, underscoring our commitment to advancing research in this field.