The Mast Cell Disease Society, Inc.

09/10/2026

Last month, we asked our community how long it took for them to receive a mast cell disease diagnosis. Thank you to everyone who shared. Your responses help us better understand the challenges facing the community and guide future conversations.

Stay connected through our newsletter: https://buff.ly/NxO83rb

09/10/2026

Barnes & Noble’s online bookstore for books, NOOK ebooks & magazines. Shop music, movies, toys & games, too. Receive free shipping with your Barnes & Noble Membership.

09/09/2026

Early bird registration for MastCellCon ON TOUR in Phoenix ends tomorrow.

MastCellCon is an opportunity to step away from navigating mast cell disease on your own and spend time learning alongside people who understand. This October, our Phoenix event will bring the TMS community together for expert-led education and the chance to connect in person.

Register by tomorrow to receive early bird pricing for October 9–10: https://buff.ly/E22QtM0

MastCellCon On Tour is a patient-centered education event created by The Mast Cell Disease Society (TMS) for people living with mast cell diseases. It brings the content and community of MastCellCon directly to you -- in a smaller, more personal setting. The program runs across a Friday afternoon an...

09/09/2026

Register here: smpathways.com/events.

Join Cogent Biosciences on September 10, 2026 at 6:30 PM ET for the virtual webinar Behind the Bite: Food and Systemic Mastocytosis. The discussion explores how food and histamine may influence symptoms in systemic mastocytosis, including what to look for in everyday eating. You'll also learn how tracking food and symptoms can lead to more meaningful conversations with your care team.

09/09/2026

When people hear the words "rare disease", they often think of something that touches very few people. The reality is different.

A rare disease is a condition experienced by fewer than 1 in 2,000 people. Yet, with more than 6,000 known rare diseases, they are part of the lives of over 300 million people worldwide.

Behind these numbers are people and families navigating delayed diagnoses, limited treatment options, fragmented care, isolation and other everyday challenges that often go unseen.

Rare diseases are rare.
People living with them are not.

💚 Learn more at: https://go.eurordis.org/whatisararedisease

09/09/2026

"We know that chronic urticaria (CU) can be a comorbidity for people living with mast cell diseases. That’s why we’re sharing this helpful information from our friends at the Allergy & Asthma Network on signs that may point to chronic hives below:

Could it be chronic urticaria?

✅ Itchy hives lasting 6+ weeks

✅ Swelling of lips, eyes, hands or feet

✅ Symptoms that appear daily or most days

✅ Hives that change location but never fully go away

If this sounds like you, it’s time to talk to a healthcare provider.

🖥️ Visit Allergy & Asthma Network's ChronicHives.info for more."

09/08/2026

Living with systemic mastocytosis means carrying experiences that others don’t always see.

Now is your chance to help others understand what life is really like. 💜

Join Below the Surface by submitting one question you wish someone would ask about your experience. Your voice can help spark meaningful conversations, foster connection, and remind others living with systemic mastocytosis that they are not alone.

Every question submitted also help support the community—Cogent Biosciences will make a donation to The Mast Cell Disease Society for each submission.

Share your question and help bring what lives below the surface into the light.

https://buff.ly/YIEB9mU

09/06/2026

TMS support groups provide a welcoming space for patients and caregivers to connect, share experiences, and feel supported.

Explore the full schedule and learn more: https://buff.ly/iPS3BQo

09/02/2026

What happens when patients help shape rare cancer research?

Join NORD’s Rare Cancer Coalition on Thursday, Sept. 17, at noon ET for a webinar exploring how patient perspectives can strengthen rare cancer research in recognition of Rare Cancer Day.

Experts and patients will discuss:
- Opportunities and challenges rare cancer patients face when participating in research
- Why incorporating patient perspectives is essential to advancing future studies

Together, we can help shape the future of rare cancer research. Register today and be part of the conversation.
https://bit.ly/4y8UGxQ

09/02/2026

Today is the final day to register for the Precision Medicine in Genetically Defined Ehlers-Danlos Syndromes event, taking place September 3-4.⁠ Join this event in Ghent, Belgium, or watch virtually worldwide in over 60 languages.⁠

This global networking event will bring together clinicians, established and early-career scientists, patient representatives, policymakers, and other key stakeholders to advance collective understanding and action in genetically defined types of EDS.⁠

Health professionals can claim up to 11 Continuing Education credits for live sessions.⁠ Learn more and register today at https://www.ehlers-danlos.com/precision-medicine-for-genetically-defined-ehlers-danlos-syndromes/