Masto Connect
Resource Hub
The Reason Behind Our Efforts
Blueprint Medicines and Gryt Health are dedicated to bringing together and empowering patients and caregivers impacted by Systemic Mastocytosis (SM). By fostering a strong, connected, and supportive community, we aim to drive meaningful change and improve lives through collaboration and the sharing of experiences.
Why This Matters
Living with or caring for someone with a rare disease like SM can be isolating and can come with significant challenges that extend beyond initial diagnosis. Fostering a supportive community and providing access to resources and shared lived experiences may greatly reduce feelings of isolation and help people navigate through their journey with confidence, resilience, and a sense of connection.
Living with or caring for someone with a rare disease like SM can be isolating and can come with significant challenges that extend beyond initial diagnosis. Fostering a supportive community and providing access to resources and shared lived experiences may greatly reduce feelings of isolation and help people navigate through their journey with confidence, resilience, and a sense of connection.
Learn MoreHow We’re Creating Change Now
Patients, caregivers, patient advocates, and healthcare professionals from the SM community played an instrumental role in how this platform was created. Like them, we want you to know your voice and your experience matter. We aspire for this platform to be more than just a space for sharing and learning—we want it to be a catalyst for self-advocacy, empowering you to confidently express yourself, share your unique journey, and engage with members of this community.
Patients, caregivers, patient advocates, and healthcare professionals from the SM community played an instrumental role in how this platform was created. Like them, we want you to know your voice and your experience matter. We aspire for this platform to be more than just a space for sharing and learning—we want it to be a catalyst for self-advocacy, empowering you to confidently express yourself, share your unique journey, and engage with members of this community.
Learn More
"I often feel like a detective, trying to figure out what's setting off my symptoms. It's a constant learning process about my own body. Stress and physical exertion - these are almost impossible to get rid of; and having a disease that can be triggered by these types of things makes it difficult to even function like a normal person.”
- Wes S.* , Patient, Indolent Systemic Mastocytosis
How Others Are Feeling
In the face of the complex journey of living with SM, unity and understanding can be fostered through trust and support. By sharing experiences and learnings, we can enhance our communication, deepen our understanding of needs and feelings, and navigate challenges together.
"Not having people truly support us has been the hardest on my mental well-being. People won’t accommodate us because they don’t believe it’s real or as severe as we say it is."
*Featured quotes are provided by patients who were compensated to share their experience with SM. Individual experiences may vary.
Hover over an experience to learn more
Sensitivity to Scents
“People don’t realize how quickly laundry detergent, deodorant, perfumes, and other scents can trigger anaphylaxis for me”
Stress and Physical Exertion
"It's tough, really. Stress and physical exertion are huge triggers for me. It’s like trying to avoid the unavoidable, and it makes just 'being normal' a real challenge."
Anxiety
“My anxiety has gone through the roof from going to appointments and being dismissed constantly. Having to fight to be heard and believed.”
Blueprint Medicines Patient Affairs is proud to collaborate with GRYT Health to bring Masto Connect platform and webinar series to the community. We envision an empowered community where patients access optimal care for the treatment of mast cell diseases, enabling their pursuit of life goals and aspirations.
Blueprint Medicines is a biopharmaceutical company focused on allergy/inflammation and oncology/hematology.