Care about Rare

Today is Rare Disease Day.

The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives and their families.  There are around 7,000 rare diseases and less the 500 of these disease have a treatment option.  50% of rare diseases affect children, approximately 15 million children. And the fact remains that families and private foundations provide 3% of all medical research funding for treatment options.

rare

What can you do?

  • Help spread awareness. Use social media outlets to share that you care about rare.  Post about Jack or others living with rare disease.
  • Join local foundations to support raising awareness for rare diseases in your community.  Rare Disease Foundations
  • Instead of that Starbucks coffee in the AM, donate towards research.  I know sometimes it doesn’t feel like the price of a cup of coffee could make a difference, but in the rare disease world every cent counts.
  • Offer support to a friend of family member who is suffering due to rare disease.  Make them dinner, run an errand, or just sit with them.  Today is a day to show you care about rare.
  • Get involved in legislation.  Rare disease affect 1 in 10 people, this is voting power. Today you can watch the livestream of the Legislative Conference to learn what to expect from the new Congress.  You can call or email your members of Congress on Lobby Day which is Wednesday, March 1st.

We are making progress folks, this day would not exist without the progress.  Thank you for your voice!

 

Much love and peace~

jamie

 

 

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