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.

International Mastocytosis & Mast Cell Diseases Awareness Day | October 20

“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!

Rare Disease Day | February 28

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.

Ways to Be Involved

Follow the International Committee Online and on Social Media:
Join TMS and the International Committee in raising awareness! Add a Facebook profile frame, download logos and ribbons, or even host a Facebook fundraiser.

Become 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.

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.

Spread Awareness:

  • Shop Official TMS Gear: Each year we create specific awareness gear for International Mastosytosis & Mast Cell Diseases Awareness Day and Rate Disease Day. All proceeds benefit TMS’s mission.
  • 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
  • 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
  • Get Creative: Decorate your door, locker, car, pumpkins purple with white polka dots! TMS_Become an Advocate_InternationalMCDAwareness Day
    to get you started.

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.

Donate Now:
Your generosity makes all the difference in finding a cure. Give Today.

How to Contact Your Elected Officials

Are you visiting your elected official during Rare Disease week? RDLA-a rare disease advocacy organization and sponsor of Rare Disease Week on the Hill has prepared a host of information to help you with your visit.  TMS highly recommends that you review the links to make the most use of your time assuring you lay the groundwork for a partnership with your legislator.  It is important to remember to continue dialogue with your legislator.
www.rareadvocates.org/advocacy-tools

For this year’s rare disease day, we are offering these talking points and helpful advocacy tips as well.

Contact Federal Elected Officials

  • President Donald Trump—Contact the president of the United States by filling out the online contact form or by calling the White House switchboard at 202-456-1414 or the comments line at 202-456-1111 during business hours.
  • Members of the U.S. Congress
    • U.S. Senators—Get contact information for your Senators in the U.S. Senate.
    • U.S. Representatives—Find the website and contact information for your Representative in the U.S. House of Representatives.

Contact State Elected Officials

Contact Local Elected Officials

  • U.S. Mayors—Locate mayors by name, city, or population size.
  • County Executives—Search on a map or by your ZIP code to find the head of the executive branch of government in your county. (The county executive may be an elected or an appointed position.)
  • Other Local Government Officials—Get contact information for your city, county, and town officials in your state.