Rare Disease Day

Rare Disease Day 2019!

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.

“The 12th edition of Rare Disease Day will focus on bridging the gaps in the coordination between medical, social and support services in order to tackle the challenges that people living with a rare disease and their families around the world face every day.  Rare Disease Day 2019 is an opportunity to be part of a global call on policy makers, healthcare professionals, and care services to better coordinate all aspects of care for people living with a rare disease.”   https://www.rarediseaseday.org/page/news/theme-2019

Other sites supporting Rare Disease Day:

https://www.rarediseaseday.org/

https://www.facebook.com/rarediseaseday/

https://globalgenes.org/rotr2019/

https://ncats.nih.gov/rdd

https://rare diseases.org/rare-disease-day/

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Some Ways To Be Involved:

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, 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.

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:

This year the Rare Disease Day organization has chosen zebra stripes to represent ALL rare diseases on this day. They are asking people to “Wear Your Stripes”!  You can wear zebra stripes on t shirts, scarves, etc.

There are several different ribbons used to support rare diseases to choose from: Cut a small strip of blue ribbon (TMS), blue jean fabric (Global Genes), or purple dotted ribbon (International Mast Cell Diseases) to wear/give out as a ribbon.

(To explain some confusion about ribbons/colors: EDS uses a zebra striped ribbon all year long to represent their specific disease, TMS uses a blue ribbon to represent its specific organization, and the Mastocytosis and Mast Cell Diseases International Committee uses a purple with white dots ribbon to represent mast cell diseases internationally. the Rare Disease Day Org has also chosen zebra stripes to represent all rare diseases for this day. Choose the ribbon that has the most meaning for you.)

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.

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. Send your stories to Advocacy@tmsforacure.org and we’ll post some here (with permission).

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.

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How to Contact Your Elected Officials:

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.

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From RDLA:

Save the Date: Rare Disease Week on Capitol Hill Webinar: Do you want to learn how to be an advocate for rare diseases? Do you want to have your voice heard on Capitol Hill? Do you want to meet your Members of Congress? If you answered yes to any of these questions, you should attend the Rare Disease Week on Capitol Hill Webinar on February 14th at 12 pm EST. You will learn about the different events we have lined up during Rare Disease Week on Capitol Hill, the legislative conference agenda, the Hill meeting “asks”, and our legislative priorities. Register here.

 Register Now for Rare Disease Week on Capitol Hill, February 24-28, 2019: Attention Advocates: Please note that Rare Disease Week on Capitol Hill will NOT be impacted by the partial government shutdown. Congress and the National Institutes of Health have been funded and remain operational. Registration is now open at rareadvocates.org/rdw. RDLA will bring over 500 patient advocates to Washington, D.C. for a week of events dedicated to empowering patients, families, and friends to become legislative advocates. Advocates will have an opportunity to meet with Members of Congress and learn best practices for successful advocacy. 

On February 28th, as part of Rare Disease Week on Capitol Hill, the NIH will host Rare Disease Day at NIH. This event aims to raise awareness about rare diseases, the people they affect and NIH research collaborations to advance new treatments. Learn more and register for the NIH event on their website.

Stay Connected
Stay up to date on breaking rare disease legislative news by following @RareAdvocates on Twitter and Facebook and rare_advocates on Instagram.

 






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.