Rare Disease Day: TMS - The Mast Cell Society
TMS - The Mast Cell Society

Mast Cell Diseases & Rare Disease Days

We are grateful for two special awareness day opportunities each year, to be connected, become advocates, and raise awareness of mast cell diseases.

Upcoming Days:

October 20
International Mastocytosis & Mast Cell Diseases Awareness Day

“Connecting to Change the Future. Our Future”

In 2018 the Mastocytosis and Mast Cell Diseases International Committee was formed by 23 organizations from 21 countries, with the purpose to connect patients, physicians, and researchers from around the world to share their support, contacts and treatment information. TMS is proud to participate as a founding member of this effort and celebrating the International Mastocytosis & Mast Cell Diseases Awareness Day, annually on October 20!

February 28
Rare Disease Day

Annually, Rare Disease Day takes place on the last day of February, where all rare diseases come together with an objective to raise awareness both within the general public and among decision-makers about rare diseases and their impact on patients’ lives. Each year, the National Institutes of Health sponsors Rare Disease Day at NIH as part of the global Rare Disease Day. Often, TMS representatives join the NIS and many other rare disease patient advocacy organizations for a day of presentations, exhibits, poster presentations and tours of the clinical center.

Above is our slideshow for the 4th International Mastocytosis & Mast Cell Diseases Awareness Day, played at our conference closing ceremony and purple tie evening.

Ways to Be Involved

Follow the International Committee Online and on Social Media

Join TMS and the International Committee in raising awareness! There are a lot of ways to be involved in our awareness efforts listed below!

Spread Awareness

  • Apply for a State Proclamation: If you live in the US it is fairly easy to request that your governor “Proclaim” October 20th as MCD Awareness Day! However, the amount of time that it takes varies by state, with some only requiring 30 days notice and some requiring 120 days notice. You can find the guidelines for your state and a template here: https://tmsforacure.org/wp-content/uploads/2023/08/State-Proclamation-Guidelines.pdf
  • Share your story! Sharing your own personal story is a simple yet powerful way to spread awareness and help others begin to understand your reality. Whether it be wearing a ribbon as a conversation starter, a letter to the editor, or a quick post on Facebook- every effort helps! Together we are stronger and together we can make a difference. Send your stories to Stories@tmsforacure.org and we will share stories (with permission) with our members.
  • Letter to the Editor: Send a letter to the Editor of your local paper or other media outlet about mast cell disease. You can start with this template: Letter to the Editor for Rare Disease Day
  • Awareness Ribbons: There are several different ribbons used to support rare diseases to choose from. Simply create your ribbon by cutting a small strip of ribbon to wear and give out! Choose a ribbon that has the most meaning for you.
    • Mastocytosis and Mast Cell Diseases International Committee uses a purple with white polka dots ribbon to represent the spots/hives/rashes that many mast cell patients suffer with.
    • EDS uses a zebra striped ribbon all year long
    • Rare Disease Day Org uses a zebra stripes to represent all rare diseases for this day
    • Global Genes uses a blue jean fabric ribbon
  • Get Creative: Decorate your door, locker, car, pumpkins, purple with white polka dots.

    Join the TMS’ Fundraising Team!

    We couldn’t fund all the supports, education programming and research that we do with out the generous support of our sponsors and donors. We rely on our team of fundraising volunteers to help us in these efforts and there are a lot of ways that you can help:

    • You can contribute to the current TMS funding campaigns.
    • Shop Official TMS Gear: Each year we create specific awareness gear for International Mastosytosis & Mast Cell Diseases Awareness Day and Rare Disease Day. Buying and wearing our Awareness day gears allows you to help spread the word and support TMS as all proceeds benefit TMS’s mission.
    • Host a fundraiser: There are many ways to raise funds to support research, education, and advocacy for Mast Cell Diseases. In the month of February and/or October consider creating ways to raise funds: host a cook-off, dance-a-thon, walk-a-thon, children’s decorated bike parade, bake sale, contact a local business/restaurant to donate percentage of profits for that day, create a FB fundraiser to reach out to your friends and families who may want to donate in your honor. etc.

    Resources from Past Awareness Day Campaigns

    Download New 2021 TMS – International Awareness Day Social Media Graphics Campaign

    Share Infographics: Please share these on social media or even use as handouts. https://tmsforacure.org/printable-resources-infographics/ Click below for a printable pdf.

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