Rare Disease Day

Rare Disease Day 2018!

Rare Disease Day takes place on the last day of February each year with an objective to raise awareness both within the general public and among decision-makers about rare diseases and their impact on patients’ lives.

Some Ways to be Involved Are:

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

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 consider creating ways to raise funds- host a cook-off, dance-a-thon or a bake sale, create an online fundraiser to reach out to your friends and families who may want to donate in your honor.

Facebook
Like our new public Facebook Page – The Mastocytosis Society Inc. News!
Add a Facebook profile frame to raise more awareness among your community. Host a Facebook Fundraiser!

Wear a Blue Ribbon
Cut a small strip of blue jean to wear as a ribbon.

Share Infographics
Please share these on social media or even use as handouts. More infographics will be added throughout the month of February. Please visit regularly! Click below for a printable pdf.

Share your story!
Sharing your own personal story is a simple yet powerful way to spread awareness. 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.

Donate Now 
Your support ensures we can continue our fight to find a cure for us all. To make a donation or learn more click here.

 

2018

A Mastocytosis Patient Shares Her Perspective at Deciphera Pharmaceuticals

On February 28, 2018, in honor of Rare Disease Day, The Mastocytosis Society provided the employees at Deciphera Pharmaceuticals with the opportunity to hear first-hand from a patient perspective what it’s like to live with systemic mastocytosis […]

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TMS visiting Capitol Hill!

TMS Regional Support Group Leaders attended Rare Disease Day on Capitol Hill to learn about key federal legislative issues, meet other advocates, and learn best practices for building effective relationships with Members of Congress and their staff.

Join several regional members for a documentary screening on Feb. 25th!
Rare Disease Legislative Advocates kicked off Rare Disease Week on Capitol Hill by hosting the 2018 Rare Disease Week Documentary Screening and Cocktail Reception! Sunday, February 25th, 2018 at 5:30 p.m. at the Naval Heritage Center, 701 Pennsylvania Avenue, NW Washington, D.C. 20004-2608.

TMS will be at NIH’s Rare Disease Day Event on March 1st!

Each year, the National Institutes of Health sponsors Rare Disease Day at NIH as part of the global Rare Disease Day. This year’s global theme was “Research” continuing from 2017, and the slogan is “Patients are not only subjects but also proactive actors in research.” The main objective of Rare Disease Day is to raise awareness among the general public and decision-makers about rare diseases and their impact on patients’ lives. Rare Disease Day takes place on the last day of February each year. Members of the DC/Baltimore region mast cell disease support group will be representing the TMS at Rare Disease Day at NIH on March 1st. These TMS representatives joined many other rare disease patient advocacy organizations for a day of presentations, exhibits, poster presentations and tours of the clinical center. TMS representatives staffed a table in the exhibit hall where they educated NIH doctors/staff and rare disease advocates about mast cell disease. Anyone was able to watch the proceedings via live stream on March 1st.

2017

HOW OUR TMS COMMUNITY PARTICIPATED IN RARE DISEASE DAY 2017…

We can be the vehicles of our own message by sharing our experiences with mast cell disease with researchers and healthcare professionals in the biotech world. On Rare Disease Day February 2017, we were honored to be invited to speak at Blueprint Medicines in Cambridge, MA to help employees and researchers there learn more about Mastocytosis […]

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TMS welcomes other submissions. How did you celebrate Rare Disease Day? Email your story to secretary@tmsforacure.org.