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Feb. 21, 2014

TOPIC: Advocacy, Featured News, Patients & Members

Our Shared Vision for Rare Disease Day

Posted by Mary Dunkle

As Rare Disease Day arrives in time zones around the world, you’ll be able to track its progress on a map on RareDiseaseDay.org hosted by EURORDIS and RareDiseaseDay.US hosted by NORD.

This animation was created by NORD and is being shared – through NORD’s partnership with EURORDIS – with all supporters participating in Rare Disease Day.

The purpose is to highlight the extraordinary way in which Rare Disease Day draws people together with a single message and a shared vision.  In more than 80 nations around the world, and in nearly as many languages, patients and their supporters are focusing attention on rare diseases as an important global public health challenge.

Participating nations have all adopted a common theme – Join Together for Better Care – as well as a logo, video, poster and other resources to demonstrate solidarity.

At a moment in time when international relationships seem particularly fragmented and fragile, the message of Rare Disease Day cuts across all barriers and boundaries. NORD and EURORDIS hope that this animation will serve as a symbol that, at least for one day and this one cause, the hope for worldwide collaboration is not an elusive dream.

 

4 Responses to “Our Shared Vision for Rare Disease Day”

  1. Richard Durkee says:

    I really want to wake everyone to Huntington’s Disease. It takes many lives daily. My sister-in-law was one of them last August. Linda Call is watching over all of us now.

  2. Larry says:

    Multiple System Atrophy was given the nickname “the beast” by one researcher and let me tell you it is – my wife was diagnosed with it 1 year ago after five years of symptoms and it just keeps taking away. This weekend at a fundraiser held in her hometown of Peoria, IL, there were two MSA Type C patients in the same room and three caregivers – one had already lost his wife to the disease after a 10-year bout.

  3. Wanda Smith says:

    CVS Cyclic Vomiting Syndrome cvsa.org or google it. 17 yr survivor. At this point it is thought to be a migrane of the stomach. It’s not the same for everyone. I vomit as often as one would hiccup, for lack of a better term. This can last from hrs to weeks for some. 6 days and nights has been my longest attack thus far. No food, no water, an no sleep. It starts with violent projectile vomiting. Many times waking me up. The nausea takes over everything ! It’s in my stomach, head, legs, arms etc… The pain in my stomach is like an elephant standing on it. Every fluid leaves my body. Sweating so bad, I soak my clothes and it still runs down and drips from my body. I’ve been so mistreated at the hospital, like the episode of Grey’s Anatomy an worse. I wait until I’m forced to the e.r. Sometimes I’m so dehydrated my veins keep collapsing. No way to give me much needed fluids, sodium and potassium. They have to save my life, no time for blame. All the while still vomiting like hiccups and there’s nothing there to vomit. Lifting my head, light, talking and smells of any kind can make it worse. Possible triggers, sleeping, the lack of sleep, some smells, hunger, excitement, anything that gives me butterflys in my stomach, etc.. I don’t like to leave the house never knowing when it will attack. I’ve been blamed, given meds I didn’t need that may cause future problems. Some made me suicidal. Now I’m mentally ill ?? I could go on an on, this is the jest. Never give up ! Thanks for the day. Validation is a treatment !!

    • John Larmer says:

      Sorry you’ve got this, sounds really tough. I presume you’ve tried medical marijuana? It helps control nausea, but maybe not CVS.

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