The purpose of Rare Disease Day is to spread awareness of rare disorders
Each year Rare Disease Day is celebrated worldwide on the last day of February. This year is even more special because it’s the 30th anniversary of the Orphan Drug Act, which provides incentives to encourage companies to develop rare disease therapies, and the founding of the National Organization for Rare Disorders (NORD).
For 2013 the theme for Rare Disease Day is “Rare Disorders Without Borders.” Nowhere is this more evident than the online space, where rare disease patients and caregivers provide support for one another.
“More than half of the people who have rare diseases are children,” notes Peter L. Saltonstall, president and CEO of NORD. “Challenges faced by patients and their families include delayed diagnosis, few treatment options, and difficulty finding medical experts.”
The purpose of Rare Disease Day is to spread awareness of rare disorders. For example, many people are unaware that 1 in 10 Americans live with a rare disease. To support Rare Disease Day 2013, the team at Siren Interactive has created an infographic on rare diseases. It provides a visually interesting way to learn about orphan conditions and share this information. Read More
with more accomplishments, increased media exposure and higher awareness of rare diseases, we certainly have something to celebrate
Thanks to the Pew Internet Project, we have a lot of data about ePatients. These empowered, engaged and educated patients (and families) are helping to bring about a transformation of healthcare in this country. Pew’s Susannah Fox has named them “healthcare superheroes.”
Through our experience at Siren Interactive, we know a lot about rare disease patients who are supercharged ePatients. These patients are hyper-empowered. Because they have to be. Leading up to Rare Disease Day on February 29, 2012 (a rare day indeed) I’d like to celebrate some of the amazing accomplishments of a few rare disease communities.
Rare disease patients start clinical trials Team Sanfilippo Foundation is a nonprofit medical research foundation started by a group of parents with the mission of finding potential therapies that can be tested clinically in the near future. Team Sanfilippo used social media to beat out thousands of others to win $250,000 from the Pepsi Refresh Project. The grant funded a clinical trial led by Dr. Haiyan Fu of the Research Institute at Nationwide Children’s Hospital in Columbus.
Each year, Rare Disease Day is celebrated on the last day of February
PharmaPhorum asked Siren Interactive to write a series of blog posts about the world of rare diseases. In this six-part series, titled “Rare is different,” we’re showing how working within rare diseases is unlike other pharma markets, particularly in the knowledge and influence wielded by patients and caregivers. Below is an abstract from the final post: Innovation Happens at the Margins.
Due to the nature of the condition, a patient diagnosed with any one of the more than 7,000 rare diseases and disorders is part of a niche population on the margin of medicine. Their treatments establish the border — the edge of the latest medical advancements resulting from significant financial investment, targeted research and relentless patient advocacy.
New rare diseases are discovered every year. Most are inherited and caused by genes mutations. Others are the result of environmental and toxic conditions. All that has been or will be achieved in the advancement of rare disease therapies started with an impassioned force of patient advocates focused on an urgent mission. Their collective voice pushes government, business and science to a common ground that provides the platform for innovation at the margins.
The video below is a great example of how biotech and pharmaceutical companies are supporting Rare Disease Day. The Dutch Rare Disease Day was celebrated on May 15 and Genzyme planned a flash mob ending for the event in Amsterdam. They arranged a top choreographer, professional dancers, and contestants of ‘The Voice of Holland’ and ‘So You Think You Can Dance’ to prepare a sensational show. Enjoy!
The goal of 10,000 clicks was exceeded and Lundbeck donated the maximum amount of $10,000 to NORD
Waking up at 4:00 AM to go stand outside in the cold isn’t usually my idea of fun, but for Lundbeck’s Rare Disease Day event on Monday morning, it was most certainly worth it!
Nina Prybula, Tanika Craig, and I represented Siren and joined 25 other rare disease advocates outside the NBC 5 news studio to promote awareness of the Raise Your Hand with Lundbeck to Fight Rare Diseases campaign. As you can see in the video below, we waved our big purple hands as the newscasters announced how viewers could help donate money to the National Organization for Rare Disorders (NORD) by simply clicking on the Raise Your Hand icon on the Rare Disease Day U.S. website. (Please note that the donation period is now closed). For every click, Lundbeck promised to donate $1 to NORD’s general research fund.
The goal of 10,000 clicks was exceeded and Lundbeck donated the maximum amount of $10,000 to NORD. We were not only thrilled about the outcome, but felt honored to have had a chance to meet the other rare disease advocates and patients. Just listening to people’s individual stories and how they have overcome adversity was reason enough to get up before the sunrise that morning. All the participants were so inspiring that it really made you feel good to be able to support such a worthy cause.
the internet gives patients and caregivers access not only to information, but also to each other
The Pew Internet Project and the California HealthCare Foundation today release a new report, “Peer-to-peer Healthcare.” It includes insights from an online survey of 2,156 members of the National Organization for Rare Disorders (NORD), which show the depth and breadth of what is made possible when patients and caregivers connect with each other online.
The research supports what we’ve found through our work in rare diseases: the internet gives patients and caregivers access not only to information, but also to each other. This report shows how people’s networks are expanding to include online peers; especially for those with a rare disease. Health professionals remain the central source of information for most Americans, but “peer‐to‐peer healthcare” is a significant supplement.
People Like Me
When asked about the last time they had a health issue and where they looked for information, people living with a rare disease far outpaced all other groups in turning to their peer network. More than half of rare‐disease respondents say they turned to family and friends. Another majority say they turned to others who have the same health condition. It’s important to note that health professionals were still the most popular choice even among this highly‐networked group.
Even I, who work in the rare disease space, wasn’t on the lookout for a rare disease
This post is written by a colleague who also works in the rare disease space. She wishes to remain anonymous to protect her son’s privacy.
My teenage son was recently diagnosed with the rare disease Alpha-1 Antitrypsin Deficiency (called Alpha-1 for short). Looking back, all the signs were there. Even I, who work in the rare disease space, wasn’t on the lookout for a rare disease. Alpha-1 is an inherited condition and occurs when there is a lack of a protein in the blood called alpha-1 antitrypsin (AAT) that is produced by the liver. The main function of AAT is to protect the lungs from inflammation caused by infection and inhaled irritants, such as tobacco smoke.
A few years ago, at an industry seminar, I even had the opportunity to hear John Walsh speak, President and CEO of the Alpha-1 Foundation and Co-Founder and President of AlphaNet. Mr. Walsh, along with his brother, has Alpha-1. As he discussed the disease, I couldn’t help but wonder If that was what my grandfather died of (diagnosed as emphysema), my uncle at age 50 died of (lung complications) or what two of my aunts were dealing with (both lung issues, one diagnosed with Sarcoidosis). I told my mom that my aunt should be tested for Alpha-1. Along the way, I was informed that the disease generally doesn’t affect African Americans, so I automatically ruled it out and moved on. Read More
Alnylam Pharmaceuticals has agreed to donate $10 for every video posted (up to $5,000)
As part of Rare Disease Day 2011, the National Organization for Rare Disorders (NORD) is inviting patients and family members to create a video library of rare diseases. The goal of the project is to educate the public through the stories of people with a variety of rare diseases.
Answer Three Questions
NORD is requesting 30-90 second videos that answer three simple questions:
What rare disease affects you (or loved one)?
How does this affect your (or their) life?
What advice would you give to other people affected by this disease or another rare disease?
The videos will be posted to the NORD YouTube channel and help to increase public awareness. To see a few example videos, go to http://youtube.com/raredisorders. Videos should be uploaded via the RareDiseaseDay.US site.
Rare Disease Day is February 28, 2011, and Siren Interactive is proud to collaborate with NORD in order to raise awareness
For the first two years of her life my daughter, Casey, had medical issues but no diagnosis of what was wrong. Despite some of the best doctors in one of the largest cities in America trying to find a diagnosis, it came down to me, her mother, doing Google searches. I became a “Detective Mom.” Desperate for knowledge, I was able to locate the information that eventually led to the diagnosis of a rare disease: nail-patella syndrome. Today, Casey is thriving, enjoying fourth grade, and playing goalie on a soccer team.
Unfortunately, my story is way too common. This is why Rare Disease Day is so important. Rare Disease Day, sponsored in the U.S. by the National Organization for Rare Disorders (NORD), is held every year on the last day of February. This year, Rare Disease Day is February 28, 2011, and Siren Interactive is proud to collaborate with NORD in order to raise awareness of the nearly 7,000 types of rare diseases.
Yet, because there are more than 6,000 rare diseases, 1 in 10 people in this country are impacted
Imagine that your health is failing or that your child is very ill, but the doctor can’t figure out what’s wrong. This goes on for a number of years, despite multiple visits to specialists. Then when you do get a diagnosis, you learn that you may never meet anyone else who has this disease or has even heard of it since it affects only a few thousand people. Unfortunately, this describes the experience of many people with rare diseases.
That’s why it’s so important to increase awareness of rare diseases. February 28, 2010 has been designated as worldwide Rare Disease Day to call attention to the public health issues associated with rare disorders. A rare disease is one that affects fewer than 200,000 Americans. Yet, because there are more than 6,000 rare diseases, 1 in 10 people in this country are impacted.
In the U.S., Rare Disease Day is being sponsored by the National Organization for Rare Disorders (NORD). As experts in helping organizations communicate with small patient populations, Siren Interactive is partnering with NORD to promote Rare Disease Day.
Siren designed a website and developed a social media strategy that included Facebook and Twitter to provide access for the rare disease community to the many ways that NORD offers to participate in this movement. Read More
