Rare Disease Day – February 28, 2018

Rare Disease Day takes place on the last day of February each year.  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.  The campaign targets primarily the general public and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.

WHY?  Building awareness of rare diseases is so important because 1 in 20 people will live with a rare disease at some point in their life.  Despite this, there is no cure for the majority of the rare diseases and many go undiagnosed.  Rare Disease Day improves knowledge amongst the general public of rare diseases while encouraging researchers and decision makers to address the needs of those living with rare diseases.

 What Can YOU do to help Raise Awareness of Polymicrogyria?  Informing the world about a rare disease can seem like a huge undertaking.  But if we all do our part, the task will become less  overwhelming.  Start small within your own community. Listed below are some key ideas that can help bring awareness of PMG right in your own neighborhood!

  • Tell Your Story!  Many people within the rare disease community have searched long and hard for a story that resembles their own, but with little success. The isolated nature of many rare diseases makes it essential to speak up. Your individual story could be invaluable to someone still searching. It’s also an important way to raise awareness about a disease and can help researchers, doctors, and donors understand the human dimension of the work they do and support. With the majority of healthcare professionals unfamiliar with identifying and treating patients with rare diseases, most patients and their family members must rely on themselves or other patients and caregivers to learn about their own conditions.   PMG Awareness Organization encourages you to tell your story and would LOVE to hear from you!  When someone first receives the diagnosis, the immediate response is to look on the internet for more information.  Your story could offer hope to someone else and give them a reason to not feel alone.  If you would like to have your story published in the Family Stories section of our website, please contact robin@pmgawareness.org  today!
  • Use Your Social Media Accounts to Spread the Word!  Talk about PMG often and how it relates to your child and family as a whole.  No one will understand what PMG entails unless we openly discuss it.  Help raise awareness by talking about key topics relating to PMG.  You can find a multitude of information on this website under the Patient Brochure tab.  https://pmgawareness.org/wp-content/uploads/2012/05/PMG_Pamphlet_in_English.pdf  Print this brochure out and take it with you to doctors appointments, therapy appointments and the like.  Ask if you could leave some behind for other patients to read
  • Purchase Your PMG T-shirt and Wear It Often!   Back by popular demand and in honor of Rare Disease Day, PMGA has proudly relaunched their most popular shirt design!  It is ONLY AVAILABLE until the close of Rare Disease Day which is February 28th, 2018!  These shirts are great conversation starters and give us the ability to easily talk about and explain what Polymicrogyria is!  Please go to https://www.customink.com/fundraising/ilovesomeonewithpmg and purchase yours today before time runs out!

 


 

  • Organize a “Wear That You Care Day” at your local corporations, organizations and schools.  Ask your employer if you could organize a day where employees are allowed to dress down and wear denim jeans (or pink and grey)  for a $5.00 donation to PMG Awareness Organization.  This will allow you to talk about PMG and raise awareness at your place of employment.  Organize a “PMG Day” in your child’s classroom or school and see if your teachers and school staff would allow you to speak on behalf of your child or distribute material on PMG. You can also visit https://globalgenes.org/wear-that-you-care/ for more information on starting a local event.
  • Show You Care & Share Your Rare Campaigns.  Take part in an interactive face paint social media campaign to raise awareness of rare diseases and show your support for the rare disease community! Show your rare. Show you care.  For more information and other creative ideas, please visit http://download.rarediseaseday.org.s3.amazonaws.com/2018/ShowYourRare_Infosheet.pdf
  • Volunteer for PMG Awareness Organization.  PMGA is always looking for willing and passionate volunteers who are dedicated to making a difference for our children and families who are affected by PMG.  We can’t possibly raise enough awareness alone.  The more help we have to bring our visions and goals to fruition, the better chances we have at accomplishing our mission!  We will definitely find a place for you!  If interested, please contact our Volunteer Coordinator, Katie Codes at katie@pmgawareness.org
  • Join Our Facebook Group!  Our Facebook group is comprised of hundreds of families who all share similar, if not, the same struggles on a daily basis.  Stay abreast of everything that is happening within the PMG community and make lasting connections and friendships.  Together, we learn so much from one another and when we are stand strong in community, we WILL Unlock the Mysteries of PMG!  Please request to join our group at https://www.facebook.com/groups/PMGawareness/