Official Shoe for Rare Disease Day 2011, Denim Keds?
July 13, 2010 by Catherine Calhoun
Filed under Global Genes Project
Just sayin’, if we had an official shoe. This would be a good one. Hello Keds? Hello Gap?
// Catherine Calhoun
Blog for Rare, a success and follow-up!
February 27, 2010 by Catherine Calhoun
Filed under Featured, Global Community
Feedback so far from Blog for Rare (I can’t resist a kind word):
Thanks for the wonderful opportunity – Love this! (Tanya Lachance)
Looks great, thanks Catherine! (Yolaine Dupont)
Thanks! This has been on my To Do list for 4 days. ‘Glad I got it DONE! (Hug Your Kids Today)
(Elizabeth Joshi commented on your link): “Enjoyed reading this!”
(Gina Gareau-Clark commented on your link): “that came out great, Catherine! Proud to be a part of it!”
Recap:
This week has been amazing with more bloggers joining the campaign, a blog for rare post featured on Huffington Post, kids wearing jeans at schools across the USA, a World Rare Disease Day Tweetup (thank you @specteams), Dr. Geeta Nayyar on ABC News in Washington, DC talking with Dave Lucas about World Rare Disease Day (and reminding everyone to wear jeans on Sunday!), and we even have Patrick Guelfo running the Rock N’ Roll Marathon tomorrow in New Orleans wearing a jeans ribbon!
Get clicking – here are several more great links just in time for February 28, 2010.
Emil’s Blog (Kakkis Everylife)
Harvesting Hope from Heartache
ePatients (ePatient Dave)
Common Kindness & Huffington Post
Johan (Living with Rare Disease)
An Excellent Article (Touches on Rare Disease)
A Twitter Conversation (Funny, Science Broadly)
Bloggers, please stay tuned for future campaigns
– and my gift to you:
Please post this badge proudly – couldn’t have done a thing without all of your help!
Catherine Calhoun
P.S. Please post pictures of jeans and jeans ribbons to the Global Genes Project Facebook Page.
Blog for Rare! Bloggers from around the world come together for rare disease awareness and support for World Rare Disease Day 2010 (Feb. 28). #blog4rare
February 21, 2010 by Catherine Calhoun
Filed under Featured, Global Community
Welcome to the first official “Blog for Rare.” We’re bringing people from across the world together this week in celebration of World Rare Disease Day 2010 (February 28).
This SNiPs post is a mix of web links to specific blog posts and to bloggers who have a connection to rare disease (a blog roll of sorts). The links are in no particular order (and if I’ve left anyone out, please let me know so I can add you to the mix). Please spread the word – on the web, Facebook, and Twitter (#blog4rare, #raredisease), etc.
Small Portion of Life’s Journey
Dr. Val’s Blog (Better Health)
Moments in the Undiagnosed World
Rare Disease Blogs (Eurordis & NORD)
Claire Bidwell Smith at Mamapedia
You’re invited (Facebook event, here):
By Silvia Jané:
On the 28th of February is the World Day of Rare Diseases. I propose to make a picture of the moon and hang it (there will be a full moon) in solidarity with all people with rare diseases that share the same moon that the other inhabitants of the earth. Don’t forget the name of the place from you have took the pic!
Up Next:
Happy Birthday Genome! (And here.)
A huge thanks to all of our participants and to Lauren L. for the dog drawing (I love it).
If you have any thoughts good or bad about this blog campaign – or ideas for a next time, please post a comment here or email me at hellocatcal AT gmail DOT com. Or let any of the Children’s Rare Disease Network/Global Genes Project folks know.
Until next time,
Catherine Calhoun
Volunteer/Parent
A ‘Real Life’ Dr. House – Watch Discovery Health’s ‘Disease Detectives Feb 28, 2010
February 17, 2010 by nboice
Filed under Bench to Bedside, News
A REAL-LIFE “DR. HOUSE” INSIDE THE NIH’S UNDIAGNOSED DISEASE PROGRAM
–World Premiere Special Airs on Rare Disease Day, Sunday, February 28, at 8 PM (ET/PT)–
(Silver Spring, Md.)— When physicians and medical experts are left baffled, there is one last place to send the most puzzling and dire cases—the Undiagnosed Disease Program (UDP) at the National Institutes for Health (NIH).
On Sunday, February 28, at 8 PM (ET/PT), Discovery Health brings viewers inside the UDP for the first time with DISEASE DETECTIVES, an hour-long special following a real-life “Dr. House” and his team of experts as they attempt to solve real medical mysteries and help desperate patients in just five days.
DISEASE DETECTIVES profiles Dr. William Gahl, the head of the UDP, and his multidisciplinary team of dedicated experts as they attempt to solve riddles that have perplexed other medical researchers for years. Though thousands of cases are submitted to the UDP each year, only a fraction can be accepted for examination. Admitted patients journey to NIH headquarters in Bethesda, Md., for five full days of round-the-clock testing and analysis by Dr. Gahl and his team in what often represents their last hope for a resolution.
In the special, Dr. Gahl and his team take on two extremely different but equally perplexing cases. The first involves Jayden, a 7-year-old boy who travels to the UDP with his young parents. Jayden’s developmental delays have led some doctors to believe that he could be autistic, but the fear also exists that he could be suffering from a potentially life-threatening condition. DISEASE DETECTIVES also follows Jon Page, 52, whose life has been severely disrupted by a strange condition involving a constellation of symptoms—from shaking, to muscle weakness, to chronic gastrointestinal issues. Working against the clock, Dr. Gahl and the UDP team struggle to find real answers for both Jon and Jayden’s perplexing conditions.
“You see ‘racing for a cure’ plotlines every day on scripted TV and in major motion pictures, but with DISEASE DETECTIVES, you’re seeing the genuine article.” said Alon Orstein, executive producer for Discovery Health. “This is an extremely dedicated and talented team of medical professionals whose mission is to find answers to questions that have haunted patients for years.”
DISEASE DETECTIVES premieres on February 28, which also is Rare Disease Day 2010, a global event aimed at raising awareness of the millions around the world living with rare and undiagnosed conditions. In the United States, Rare Disease Day 2010 is presented by NORD, the National Organization for Rare Disorders. Discovery Health is serving as media partner for the event for the second consecutive year. More information on Rare Disease Day and NORD can be found at www.rarediseases.org.
DISEASE DETECTIVES is produced for Discovery Health by Discovery Studios. For Discovery Health, Alon Orstein is executive producer, and for Discovery Studios, Robin Sestero is executive producer.
About Discovery Health:
Discovery Health Media includes the Discovery Health and FitTV television networks and online assets including www.discoveryhealth.com, as well as its Continuing Medical Education (CME) business and Discovery’s first stand-alone VOD service, Discovery Health On-Call. Discovery Health Media is part of Discovery Communications (NASDAQ: DISAD, DISBD, DISCK), the world’s number one nonfiction media company, reaching more than 1.5 billion cumulative subscribers in over 170 countries. Discovery empowers people to explore their world and satisfy their curiosity through 100-plus worldwide networks, led by Discovery Channel, TLC, Animal Planet, Science Channel, Planet Green, Investigation Discovery and HD Theater, as well as leading consumer and educational products and services, and a diversified portfolio of digital media services including HowStuffWorks.com. For more information, please visit www.discoverycommunications.com.
Students Prepare for World Rare Disease Day with Blue Jeans Denim Ribbons.
February 16, 2010 by Catherine Calhoun
Filed under Featured, Global Community, Global Genes Project, Kids Helping Kids, News
Check out this article on students getting a jump on World Rare Disease Day — see news article here.
Photo by Travis Spradling of the Advocate, Baton Rouge, LA
Blog for Rare Disease – Unite Bloggers, World Rare Disease Day!!
BLOG for Rare Disease!
We want to unite bloggers to raise awareness and support for rare disease.
How can you help?
We need everyone – moms, dads, family, friends, medical bloggers, pharma bloggers – anyone with something to say about rare disease. There is no limit on the number of posts, the type of posts or the direction of thoughts and opinions.
If you would like to be a part of the first ever “Blog for Rare” project, email Catherine Calhoun at hellocatcal@gmail.com. Email your link by Friday, February 19, 2010 with subject line “Blog for Rare.”
“Blog for Rare” goes live on the Children’s Rare Disease Network blog, SNiPs, the week of World Rare Disease Day (February 28, 2010).
‘Denim Jean’ Ribbon Unveiled To Promote Rare Disease Awareness
February 1, 2010 by admin
Filed under Featured, Global Community, Global Genes Project, News
Campaign Brings Together Support from over 90 Corporations, Non-Profit Foundations, Research Institutions, Hospitals and Advocacy Groups; New Blue Jeans Denim Ribbon Unveiled To Promote Rare Disease Awareness
DANA POINT, CA – February 1, 2010 – Hope – It’s In Our Genes.™ The Children’s Rare Disease Network today announced the Global Genes Project, an initiative designed to raise awareness about the prevalence of rare diseases that afflict millions of children worldwide. Rare disease advocates organizing the campaign selected a blue jeans denim ribbon as the international symbol of hope for children suffering from life threatening and chronically debilitating rare diseases.
More than 90 corporations, non-profit foundations, research institutions and children’s hospitals have signed on to support the Global Genes Project including: 23andme, Amicus Therapeutics, Better Health, BioMarin, CheckOrphan, CollabRx, Counsyl, Coriell Institute, DonateGames.org, FasterCures, FreeForm, Genetic Alliance, Geni.com, Genzyme, Hide and Seek Foundation, Jackson Laboratory, Kakkis EveryLife Foundation, Knome, Lili Claire Foundation, Life Technologies, Mayo Clinic and Shire.
Numerous rare disease foundations from countries including Australia, Argentina, Belgium, Canada, China, New Zealand, Philippines, the United Kingdom and United States are helping support the global movement by organizing activities throughout February and leading up to World Rare Disease Day 2010.
“The Global Genes Project is providing a new platform to help unite people under a common goal and to make a difference for all children suffering from rare disease,” said Nicole Boice, Founder, Global Genes Project. “We want to create a world where children suffering from chronic disease have equal access to life saving drug treatments.”
Growing Public Health Concern; Inequity Exists
Rare disease is an important and growing global public health concern that can no longer be ignored. While each disease may be rare when considered by itself, rare disease collectively impacts the lives of millions. According to estimates from the National Institutes of Health (NIH), approximately 6,800 rare diseases exist, many of which are genetic in origin, translating to an affected population of 25-30 million Americans or approximately 1 in 10 people. In Europe, the number affected is almost identical. Approximately 75% of those affected by rare diseases are children, making the rare disease category one of the most deadly and debilitating for children worldwide.
Despite the success of the Orphan Drug Act of 1983, pharmacologic treatments exist for only a small fraction of rare diseases, or approximately 200 of the 6,800 rare diseases. After 25 years of orphan drug regulations and legislation, the development path to approve new drugs has not stimulated orphan drug development for small populations of patients facing rare disease.
Current studies also suggest that it takes more than a dozen years and hundreds of millions of dollars to take a potential drug from discovery to the marketplace. As a result, severe inequity exists in access to care and treatment for millions of rare disease patients.
Denim Blue Jeans Ribbon Campaign
Leading up to the annual World Rare Disease Day on February 28, 2010, the Global Genes Project will help facilitate a series of denim focused awareness events, charitable activities and engage corporate sponsors, government officials, celebrities and the media to help spread its lifesaving message of hope.
“Blue is the color of strength and our blue jeans denim ribbon is an ideal symbol that expresses solidarity,” added Boice. “Genes and jeans are a natural fit – both are universal, come in pairs and are unique to the individual. It’s a simple concept that anyone can embrace and a powerful way to raise awareness for rare disease.”
The Global Genes Project is asking rare disease advocates and supporters across the world to wear denim jeans and blue jeans denim ribbons the week of February 22 and leading up to World Rare Disease Day 2010. The organization is also asking supporters to display the blue jeans denim ribbon symbol on their websites and to actively invite co-workers, friends and family and their community to join in spreading this global message.
Blue jeans denim ribbons can be obtained by visiting www.globalgenesproject.org. Denim jeans and ribbon wearing supporters can submit digital photos on Facebook. To join the growing list of supporters, visit http://www.globalgenesproject.org/sponsors.php.
About The Global Genes Project
The Global Genes Project is a campaign of the Children’s Rare Disease Network and a grassroots effort with the goal to increase awareness about the prevalence of rare diseases worldwide. The Children’s Rare Disease Network is a registered 501c3 non profit organization. For more information, visit www.crdnetwork.org or www.globalgenesproject.org.
“How To” – A Jean Ribbon for Global Rare Disease Day
January 4, 2010 by Catherine Calhoun
Filed under Featured, Global Genes Project
Announcing Global Genes Project!!! Wear Jeans, help sick kids!
January 4, 2010 by nboice
Filed under Featured, Global Genes Project
Finally the rare disease community has their ‘pink ribbon’!
With a community of 100 million strong in the US and equal those numbers in the EU this community is deserving of the same energy, efforts, attention and support as some of the big individual diseases like AIDS and Breast Cancer.
We live in a time when we have seen huge success from organizations engaging and building a constituencies for their disease and from outside the community – and for the first time, the rare disease community is coming together to create a broad unifying campaign that will educate, inform and transform this community as we know it. This will be the year for the rare disease community – our coming out, of sorts. There is a lot planned that will benefit this community in Q1 – Crowley movie, ‘Extraordinary Measures’, 3-Part PBS Series on technology innovations and the impact on rare disease, and the 2nd Annual World Rare Disease Day - however, Global Genes Project will become a catalyst for this community and provide a platform for ongoing outreach and engagement, garnering the much needed support that these kids deserve.
Check out www.globalgenesproject.org and join the effort on Facebook as well. There will be numerous opportunities and ideas on how individuals, rare disease organizations and corporations can get involved. It can be as easy as wearing denim genes and incorporating the adorable/identifiable jeans ribbon on your site/blog, etc.
Stay tuned for more updates!!!
U.S. and European Rare Disease Organizations Sign Strategic Alliance
October 28, 2009 by nboice
Filed under Global Community, News
Danbury, CT—–The leading advocacy groups for Americans and Europeans with rare diseases—the National Organization for Rare Disorders (NORD) and the European Organization for Rare Diseases (EURORDIS)—have signed a Memorandum of Understanding to join forces on several key strategic initiatives on behalf of rare disease patients and their families.
The intent is to increase global awareness, promote research and the development of new treatments, and provide advocacy for more compassionate public policies.
“Collaboration between our two organizations will make both stronger and more effective in representing our constituents,” said Peter L. Saltonstall, President and CEO of NORD. “Since patients with rare diseases may be located anywhere in the world, international collaboration to support and advance their needs is extremely important. This strategic partnership will help us address issues and challenges that are essentially the same on both sides of the ocean.”
Yann Le Cam, Chief Executive Officer of EURORDIS, noted that “EURORDIS and NORD are in a unique position to promote solidarity between Europe and the US and help bridge the gap between those regions of the world that have progressed more than others in their strategies to address the needs of people living with rare diseases. We can be key facilitators to promote the common interest of people with rare diseases and to empower patient advocates all over the world.”
As part of their strategic partnership, EURORDIS and NORD will:
- Co-organize an annual global Rare Disease Day
- Establish common positions on key advocacy priorities
- Play a pivotal role in the International Conferences for Rare Diseases and Orphan Drugs (ICORD) to help expand the rare disease movement
- Collaborate in the development of international web media and social networking information and communication services
- Implement an international mentoring project for rare disease patient organizations
- Coordinate more closely activities to enhance relations with the pharmaceutical and biotechnology industry
EURORDIS and NORD will kick off their collaboration with a joint public policy advocacy blog and shared online communities.
This collaboration among patient advocacy leaders mirrors other recent developments. The U.S. Food and Drug Administration (FDA) and its counterpart in Europe, the European Medicines Agency (EMEA), have announced a collaborative effort to ensure appropriate conduct of clinical trials. The two agencies have also adopted a common application for “orphan” products—products being developed as treatments for rare diseases.
A disease is considered rare in the U.S. if it affects fewer than 200,000 Americans. Almost 30 million or nearly one in 10 Americans have rare diseases. In the European Union, a disease is considered rare if it affects fewer than one in 2,000 people. There are 30 million Europeans with rare diseases.
NORD, established in 1983, and EURORDIS, founded in 1997, are both non-governmental, patient-driven alliances of patient organizations and individuals dedicated to improving the lives of people with rare diseases. The NORD website is at www.rarediseases.org The EURORDIS website is at www.eurordis.org
Contact:
Mary Dunkle
mdunkle@rarediseases.org
(203) 744-0100 (office) or (203) 482-9934 (cell)
