Rare Disease Day : Living with "Rare"

 Living with "Rare"

A blog devoted to navigating and analyzing life with 
Rare and Complex Disorders.

Rare Disease Day

by RNE submissions on 01/31/18

By Joanna Mechlinski

February marks a special anniversary for the rare disease community – it’s a decade since the first Rare Disease Day was celebrated. Held annually on the last day of February, the event kickoff was especially significant in 2008, as that was a leap year – a relatively rare occurrence.

This year’s observance will take place on February 28, but it won’t be any less monumental. Special events will be held in communities all over the world, including guest speakers, benefits and virtual events. The National Organization for Rare Disorders (NORD) launched the 7,000 Mile Rare Movement on February 1, challenging Americans to collectively walk, run or bike 7,000 miles throughout the month – in honor of the 7,000 rare diseases that some 30 million Americans and 300 million people worldwide are living with. All activities focus upon this year’s theme – a continuation from 2017 – of research. To date, there are some 300 million people worldwide living with one or more of someover 6,000 rare diseases. There is often little or no medication or treatments for their conditions, so patients and their families must often advocate for their own needs. This not only includes trying to convince researchers to embark on new studies, but also providing information for their specific disease organizations’ patient databases.

During the weeks leading up, those in the rare disease community are encouraged to help promote awareness – both for the general public and for lawmakers . Another major component of the campaign is to help patients and caregivers remember they are not alone. The internet plays a large part, with Twitter hashtags such as #ShowYourRare#MyRare, #RareDiseases and #RareDiseaseDay helping join the community as members share their personal experiences. #ShowYourRare is the inspiration behind this year’s poster and logo, as patients are encouraged to paint their faces with the rare disease logo and post selfies on their social media. 

To see what Rare New England is doing to commemorate Rare Disease Day, go to http://www.rarenewengland.org/Rare-Disease-Day-2018.html

For more information about Rare Disease Day in general or to find local events, go to www.rarediseaseday.org or to “rarediseaseday” on both Twitter and Facebook.

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A lifelong Connecticut resident, Joanna Mechlinski is a former newspaper reporter who now works in education. She was diagnosed with lupus, fibromyalgia and polymyositis in her early twenties. In addition to helping spread rare and chronic illness awareness, Joanna is also passionate about animal advocacy, reading, writing, and road trips.

 Mary-Frances Garber is a licensed genetic counselor, providing supportive counseling for families in search of a diagnosis, a listening ear for those receiving a new diagnosis and decision-making counseling for individuals or couples facing choices regarding having another child . She also is available for bereavement counseling. Patients are seen in a private office setting in Needham, Massachusetts.
Listening, Reflecting, HealingSupportive Genetic Counseling 
Find more info here.
Meet our blog writers!
Jenna Anne
  I write to you as a wife and mother of 4 children. Three daughters and a medically complex son. I live in New England and have a love of fiber arts, music, and most importantly advocating for my children. My background is in Early Childhood Education and Music Education, I have no medical background aside from what I have had to learn on this medical journey. My writing is not statistic based, it’s not guidelines or resources but rather I bring a perspective from the human experience. Often in this world of medical complexity we focus specifically on the patient and the diagnosis and treatments, my writings offer the community a different perspective on how the day to day events are affected by medical interventions. The impact it has on siblings and family. The perseverance it takes to keep a wholesome family continuously adapting and thriving amidst all the challenges of medical complexity. My writings are often raw and unapologetic and speak to the human experience behind the policy, coding and diagnostics of modern medicine.  

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