Tag Archives: rare disease

For pemphigus and pemphigoid patients, there are several events that can trigger stress and exacerbate disease activity, even simply being diagnosed with a rare disease. The time it takes to be diagnosed, the medication itself, and how it all affects our families and friends can trigger stress and depression.

Although there has been a huge public outcry over the cost of prescription drugs, there has been little public discussion about the need for innovation for patients who don’t yet have an effective therapy. It is estimated that 1 in 10 Americans suffer from a rare disease, and only 5% of rare diseases have a treatment approved by the Food and Drug Administration (FDA).

In November 2014, I used the chemotherapy drug Rituxan off-label for my rare disease, Immune Thrombocytopenia (ITP). The decision was made after careful consideration of all the possible outcomes. I was desperate for relief since ITP causes internal bleeding that can be fatal. This thought stayed in the back of my mind as I watched my platelets drop and my bleeding episodes increase in severity.

The IPPF strives to do many things for the pemphigus and pemphigoid community, but our three biggest goals are to raise awareness, create a support network, and to increase education. One of the biggest tools that we have at our disposal to accomplish those goals is social media.

More people have climbed Mount Everest than have crossed the United States of America on foot. Noah Coughlan has just finished with his amazing third run across america. Noah started a coast-to-coast run February 28, 2015 in New York City, NY. He finished after 127 days, crossing 13 states, and running 3,000 miles. He was greeted by his family, friends, and hundreds of patients with rare diseases, as he ran into the water at Ocean Beach, California on the 4th of July 2015.

Finale Finish Line Flag Done

Noah had been running to rally support for the 30 million Americans affected by rare diseases. There are over 7,000 known rare diseases – affecting 1 out of every 10 Americans. Noah’s inspiration to run comes from his personal connection to two childhood friends battling a rare brain disease called Batten Disease. Noah’s efforts demonstrated that just one person can truly make a difference. During his “Run4Rare” he was interviewed by many media outlets, met with lawmakers, engaged patients and families, and rallied support for the scientists and researchers attempting to find cures for rare diseases.

Throughout his journey Noah dedicated his daily miles to a different child or adult battling a different rare disease. On May 29, 2016 he dedicated his run to Marc Yale and the entire pemphigus and pemphigoid community. He ran an average of 25 miles per day battling adverse weather conditions and physical exhaustion. Noah ran solo while pushing an 80 pound jogging stroller of supplies. Above his stroller waved a large American flag given to him by the United States Air Force. The American flag Noah ran with every day was officially retired in a moving ceremony at Ocean Beach, CA when he arrived on Independence Day.

Noah’s unwavering dedication to be the voice for the rare disease community by running across the U.S. three times was inspiring to many advocates. One patient stated at a reception, sponsored by the National Organization of Rare Disorders (NORD), following the transcontinental run, “that he created a bridge for all rare disease groups to work together.” The impact that Noah delivered during his “Run4Rare” was to show that every person matters. Noah’s message of hope for patients with rare diseases has reached the halls of congress and every community he passed through on his journey.  His passion and tenacity as an advocate should remind us all that we need to advocate for ourselves as well as the entire rare disease community.

Noah and Marc Hannah and Noah Marc, Woman, and Noah Noah

 

15FORRARE-web-banner

What would you say if you had 15 seconds to advocate for pemphigus and pemphigoid?

Would you tell them about the statistics? Would you talk about the person you know who is struggling with their disease? The sister or brother, friend or co-worker who struggles to find treatments and support? Or would you talk about your own diagnosis and how its existence has changed your world?

Global Genes is proud to launch the #15ForRARE Campaign—a social media video movement highlighting the individual voice in the rare community. Through participation in this campaign, #15ForRARE video activists (YOU!) are entered into a contest to win two sets of tickets to this year’s RARE Patient Advocacy Summit, and Tribute to Champions of Hope Gala. A Prize valued at $1,100. There will be two winners- each able to bring a guest.

Now is your time to speak up and tell the world why you “Care About RARE.” This movement is for patients, advocates, and industry alike. Through our individual voices we will unite and bring attention to a community that so deserves it.

Here’s how you get involved and get entered into our contest:Advocate for Rare

• Film yourself “selfie” style answering the prompt “I care about rare because…”
•Video must be no longer than 15 seconds
• Video must be uploaded to our contest entry form, found here.
• Video must be posted on at least one social media platform (Facebook,Twitter, Instagram, Youtube, Vimeo, Vine) with the hashtag #15ForRARE and#GlobalGenes (Don’t forget to use #healourskin too!)

And that’s it!

Each place you post your entry is an extra entry in the contest. The winner will be selected at random from the pool of applicants. Two winners will get two free entries to Global Genes annual RARE Patient Advocacy Summit and our Tribute to Champions of Hope Gala (airfare and accommodations not included, no cash prize offered). If you have already purchased tickets and win the contest, you will be reimbursed for their cost.

Global Genes will be using the videos submitted to us for cause marketing as well as will feature them at their RARE Patient Advocacy Summit!