Rare Disease Month – Get involved and help Raise Awareness!

Feb 01, 2017

The definition of a rare disease differs by geographic region, and is defined as one that affects less than 200,000 people in the United States, and less than 1 in 2000 people in Europe. Currently, according to the National Organization for Rare Disorders (NORD), there are approximately 7000 rare diseases identified here in the US.

(https://rarediseases.org/)

Many of these diseases are genetic and thus are present throughout the person’s entire life, while others are caused by acute or chronic infections, degenerative conditions or environmental factors. Rare Disease Day is hosted every year on the last day of February and has become a global day of awareness to shed light on the many rare diseases that have been identified. The statistics are sobering, and although research continues, the reality is that for some rare disorders no treatment currently exists. The path to changing this story is by supporting and donating to organizations like The Mastocytosis Society, Inc., NORD, Global Genes, Rare Disease Legislative Advocates

(RDLA), and the National Center for Advancing Translational Sciences.

Celebrating Rare Disease Day is a great way to shed light on patients and families affected by these rare disorders and to raise awareness for mast cell disorders such as mastocytosis and its variants, mast cell activation syndrome and all other rare diseases. There are many ways that you can participate by attending events in our nation’s Capital, your own state house, or even remotely by participating in online efforts, therefore raising awareness via your own social media tools such as Facebook, Twitter, etc.

Go to your Facebook page and explain what is like living with a mast cell disorder!

Encourage your friends, family members and colleagues to learn more about mast cell disorders and to donate to support our mission of research, education, support and advocacy! Help put a face on your Rare Disorder!

Let’s speed up the race for a cure!

Alone we are rare but together we are stronger! 

Here are some amazing sites and partners that are great resources and ways for you to advocate & raise awareness on February 28th, 2017:

Rare Disease Legislative Advocates

rareadvocates.org

Rare Disease Legislative Advocates is a program of the Every Life Foundation for Rare Diseases designed to support the advocacy of all rare disease patients and organizations. By growing the patient advocacy community and working collectively, we can amplify our many voices to ensure that rare disease patients are heard in state and federal government

Global Genes

globalgenes.org

Global Genes® is one of the leading rare disease patient advocacy organizations in the world. The non-profit organization promotes the needs of the rare disease community under a unifying symbol of hope – the Blue Denim Genes Ribbon®. What began as a grassroots movement in 2009, with just a few rare disease parent advocates and foundations, has since grown to over 500 global organizations.

Rare Disease Day US

rarediseaseday.us

http://www.rarediseaseday.org/

Rare Disease Day® takes place on the last day of February each year. The main objective is to raise awareness with the general public and decision-makers about rare diseases and their impact on patients’ lives. The global theme for Rare Disease Day 2017 is research.  Research brings hope to people living with rare diseases and with your support you can help make a difference in rare disease research.

National Center for Advancing Translational Sciences

https://ncats.nih.gov/

The NCATS is “about getting more treatments to more patients quickly” according to their website. Read about their exciting initiatives, and support their goals to make new treatments a reality for patients and families!

The Rare Disease Report

http://www.raredr.com

Rare Disease Report is a website and weekly e-newsletter that offers an independent voice for the Rare Disease Community. It strives to bring together medical, scientific, investment, regulatory, and advocate professionals interested in rare diseases and orphan drugs.

 

Thank you for taking an interest in participating in Rare Disease Day!

Be the voice of patients with mast cell disorders! Help us to be heard!

The Mastocytosis Society, Inc.

Mast Cell Disorders