Living with a rare TTN-related condition can mean constantly explaining something that most people have never heard of before. For many families, those explanations happen in doctor’s offices, classrooms, therapy clinics, community settings, and even in everyday moments when people may stare or ask questions.
Team Titin created Titinopathy Awareness Cards to help make those moments a little easier.
These cards provide a brief, easy-to-share snapshot of titinopathy and some of the ways it can affect the body, including skeletal muscle weakness, breathing muscle weakness, facial and throat muscle weakness, orthopedic challenges, and heart problems. They are designed for families to share with friends, relatives, teachers, therapists, medical professionals, and members of the public who want to better understand TTN-related muscle and heart conditions.
The cards are available in both English and Spanish.
Digital versions of the awareness cards can be downloaded and shared by email, text, social media, or other digital platforms:
Click to download the digital image front and back of Titinopathy Awareness Card in ENGLISH
Click to download the digital image front and back of Titinopathy Awareness Card in SPANISH
Printable versions are also available for families who would like to keep cards on hand. These can be printed at home on regular paper or card stock and cut out manually, or printed on perforated business card paper like the Avery 28878 pictured below.
The printable files are formatted to fit Avery Business Cards Template #28878.
Click to download the PDF for Avery Business Card Template 28878 in ENGLISH
Link to PDF for Avery Business Card Template 28878 in SPANISH
When printing, be sure to set your printer to print on both sides so the front and back of each card line up correctly.
These cards were created with our community in mind. We hope they help families feel more prepared, supported, and empowered as they navigate life with a rare condition. Sometimes a small card can open the door to a bigger conversation, helping others understand what titinopathy is and why awareness matters.
If you are attending the 2026 MDA Engage workshops in Hershey or Chicago, Team Titin will have printed cards available for families to pick up in person. Details about these in-person events can be found here:
We are especially grateful to our community member, Mélany, who inspired the creation of these cards and beautifully captured why awareness tools like this matter:
“Imagine if patients start giving these cards to their new doctors or curious physicians, we could attract more medical professionals and increase interest in titinopathies. Better medical care and increased interest in research begin with raising awareness of the disease.”
Thank you, Mélany, and thank you to every family member, caregiver, clinician, researcher, and advocate helping to strengthen the titin community.
Creating and sharing these cards reflects one of Team Titin’s core mission pillars: advocacy. By helping families explain titinopathy and by raising awareness in the broader community, we move closer to a world where TTN-related conditions are better understood, recognized, and supported.
Together, we are strengthening the titin community through connection, advocacy, care, and research.