Children’s Rare Disease Network Partners With Medpedia.com To Create Rarespace
June 29, 2010 by admin
Filed under Advocacy/Policy, Bench to Bedside, Doctor Perspectives, News
Online Knowledge Share Platform to Provide Valuable Information to Rare Disease Community
Dana Point, Calif. (June 29, 2010) – Every parent needs a supportive, collaborative network full of information where medical professionals, researchers, patients, parents, advocates and the general public share knowledge about the rare childhood diseases that affect 22.5 million American families. RareSpace is an online knowledge sharing platform designed in partnership with R.A.R.E. Project, the Children’s Rare Disease Network and Medpedia.com to help grow resources for children with special needs. This resource is available online now at RareSpace.
“RareSpace is a unique and valuable tool for families caring for children with rare diseases,” says Jonathan Jacoby, CEO of the R.A.R.E Project. “With the help of Medpedia.com, RareSpace will become a safe place to share important information aggregated from the rare disease community at large, which is vital to finding hope for children.”
It’s the collaborative structure of RareSpace that makes it truly unique. The site will educate and connect users about critical resources, innovations in research, standards of care as well as best practices in treating rare diseases and disorders. Creating a community filled with medical professionals, policy advocates, researchers and parents catalyzes a free exchange of information, increasing the general knowledge quotient of every stakeholder. The goal is to supply real resources and connections for those who are in the care of children living with rare diseases and disorders, and help each family not feel isolated in their struggles to care, treat and advocate for these sick children.
“It’s so critical for families and caregivers to have a knowledge bank like RareSpace to draw from,” says Devon Watts, community manager at Medpedia.com. “We are excited that Medpedia.com is a part of connecting a community and granting an open space for dialogue and education. It’s the widespread sharing of information that will benefit patients most.”
Different from other community sites, one key advantage of RareSpace is that people can share documents and resources very easily. Discussions of genetics and genetic diseases in general happen on RareSpace, with the understanding that research on all these diseases could lead to cures for other genetic disorders as well. Articles on translational research and discussions of possible cures for diseases can be found on RareSpace. A major benefit is that medical professionals will answer questions posed by site users about treatment, best practices and how to best help these children and their families. Users will create profiles and have the opportunity to upload documents and links and connect with other users all within the RareSpace portal. In addition to connecting within RareSpace, users will have the ability to create disease specific groups that can all be linked with RareSpace. This robust platform provides numerous ways to share critical information and knowledge across the rare disease community, which can be done in a safe environment that includes representation from all of the key stakeholders involved in rare disease.
Glue Dots International Supports the Global Genes Project
April 1, 2010 by nboice
Filed under Featured, Global Community, Global Genes Project, News
An Initiative to Raise Awareness for Children Living With Rare Diseases
New Berlin, WI (PRWEB) April 1, 2010 — Glue Dots International (http://www.gluedots.com), a leader in the adhesive industry, is proud to announce the company’s support of the Global Genes project- an initiative designed to raise awareness about the prevalence of rare diseases that affect millions of children worldwide. 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. Glue Dots® is honored to have their products bond together the ribbons of awareness, in the hope that these ribbons will bond and unify support from around the world.
Earlier this year the Children’s Rare Disease Network (http://www.crdnetwork.org) launched the Global Genes Project , an initiative designed to raise awareness about the prevalence of rare diseases. 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 diseases.
“We are excited to join forces with Glue Dots on our mission to find treatments and cures for rare diseases. Together we will spread the word by bonding with people around our cause,” said Nicole Boice, founder of Global Genes Project.
“We’re very lucky to have a product that can help build awareness for such a worthy cause as Global Genes. When they contacted us with their heartfelt story, we were honored to be the adhesive bonding the ribbons that represent millions of children afflicted by rare diseases,” said John Downs, President of Glue Dots International. “We had no idea how many children were being affected and we want to help spread the message.”
Glue Dots® helped raise funds and awareness by organizing a company wide awareness week which led up to World Rare Disease Day on Feb. 28th, 2010. In the upcoming months Glue Dots is also planning different activities with Global Genes to promote awareness all year round.
“World Rare Disease Day is only the beginning of our partnership with Glue Dots International,” said Nicole Boice, founder of the Global Genes Project. “There are limitless ways that we can collaborate and we are looking forward to working together with Glue Dots and their customers through innovative programs. Together we will spread the word by connecting and bonding with people around our cause.”
To learn more about Glue Dots® partnership with Global Genes, please visit www.globalgenesproject.org or facebook/gluedotsfans.
Glue Dots International, founded in 1995, revolutionized the adhesive industry with its easy-to-use pressure sensitive products. The company holds several patents and continues to lead the industry in the development of new, efficient adhesive products for consumer, industrial and specialty markets. Glue Dots International, headquartered in New Berlin, Wisconsin, has operations in the United States, United Kingdom and Asia.
Parent Essay: It All Happens in the Grocery Store.
February 23, 2010 by KellyS
Filed under Family Life, Featured
When you have a special needs child, (or in our case, special needs children) often times you get messages from the “Universe”. Life is so chaotic and crazy that you just can’t be bothered to stop and listen to people anymore! You can’t handle the things that regular people have to say, so you just listen for the Universe to speak to you. It’s hard to find people with whom you have things in common anymore. In our case, our oldest son was born with a very rare genetic syndrome, Joubert’s Syndrome. When he was 6, we adopted two brothers, one was born addicted to Meth, and the other was a very unattached child moved to 6 different homes before the age of 2! So as you can imagine, it has always felt like we could identify with the mysterious voice of the Universe more than regular people. You think to yourself, “No one understands what my family is going through, so I’ll just put up the “Cone of Silence” and move on.” Somehow, the voice of the Universe still gets through the blinders and earmuffs you’re wearing, and you begin to get messages to help you move through the day. If I really be patient and quiet, I usually get the guidance, insight and offbeat humor that I desperately need!!! The best message I ever received was just a few months ago and laced with raw humor!
I had dared to take my 3 boys to the grocery store once again….that’s the definition of insanity! Remember the old story of walking down the same street and falling in the same hole over and over again as being the definition of insanity? Walking in a grocery store over and over again with my 3 boys is insanity! So against my better judgment, yet with a need for food; I decided to take all 3 boys in. I gave the boys stern warnings about not running off, not hanging off the cart, and not touching things. I dared to presume we would have a successful visit because I buckled David (aka/Evel Knievel) into the cart. I knew I was safe as long as he was in maximum security “lock down”. Off we proceeded into the wild green grocery yonder. I stopped to talk to the Pharmacist for literally 30 seconds and turned back around to discover David was out of the cart and running down the aisle!!! I burned holes in him with my laser red eyes as I yelled out his name! I felt like the Terminator! “Get back over here David!” He marched back with head hung low, sad that his whole plan to rule the candy aisle had been foiled!! Poor kid, but happy me because I averted a crisis!! Thank Goodness! We arrived back home safely and everyone was in one piece; I however, was once again wearing a sweaty, pitted-out shirt from the stress of the usual grocery store torture! Ugh!! I had each boy take a grocery bag inside the house, and as they marched with their bags like little soldiers, I noticed something unfamiliar through one of the bags. I started to feel hot and prickly as I wondered if we inadvertently stole something. I peered around my corner to see if the Grocery Security Police had followed me home. We quickly got inside the house and I opened the bag. I was stunned when I saw the unfamiliar stow away! It wasn’t toys, it wasn’t candy….wait for it….it was STRESS B COMPLEX VITAMINS!!!!!! This is a TRUE STORY!!! STRESS B COMPLEX VITAMINS!!!!! I quickly snatched my receipt out of my purse to see that yes, I had actually bought them too and didn’t even realize it!!! I have always felt that the stress of the grocery store is like an out-of-body experience…now I have proof!! In the few seconds that David slipped out of the cart, he had “5-fingered” the bottle of vitamins and slam dunked them in the basket with skill that would make Michael Jordan proud! I can only imagine the look he must of given the checker (though I’m thinking now, she must of thought to herself when she saw the vitamins ,”so that’s how she manages these 3 crazy animals!”) a look of,”Pleeeassse don’t ask if these are ours…my MOM NEEDS THESE…RUN THEM THROUGH NO QUESTIONS ASKED!” So out of all things my child could have slipped in the cart.… STRESS VITAMINS FOR MOMMY! If you don’t think that’s some divine message from the Universe, you are not alive!
So my point is that I have tried to explain our situation to people over the years and they sometimes “glaze over” in confusion and disbelief, especially when I try to explain Derek’s rare syndrome! So you just have to be patient and soon enough, you’ll get back to regular relationships and communication with other typical parents again. After a while, you learn not to take things so seriously and sometimes you can actually muster up some humor about the whole situation. But until you do, you might as well just talk to yourself and let the Universe answer back! Me and the Universe have a pretty good relationship now! I think we understand each other….I don’t ask the impossible anymore (ie: “Why me?”) and the Universe tries to entertain me!
By Kelly Seymour
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
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
Drug Development Under the Orphan Drug Act – It needs a fix!
February 8, 2010 by nboice
Filed under Advocacy/Policy, Bench to Bedside, Featured
There is a tremendous amount of frustration with the current state of rare/orphan drug development. With over 7,000 rare diseases only 344 therapies & treatments have been developed. So what have been the road blocks and what is the community currently doing to accelerate drug development.
One parent advocates’ perspective on this ongoing debate:
http://addiandcassi.com/wordpress/numbers-dont-add-up-only-344-new-drugs-approved-by-fda-for-30-million-americans-with-rare-disease-in-past-25-years/
Make Rare Disease a Top USA Health Care Priority, Vote Today at Change.org – 25 Million+, It is time to care about rare disease.
February 1, 2010 by Catherine Calhoun
Filed under Featured, News
For the millions and millions of kids and adults, brothers and sisters, moms and dads, families of every sort, friends, doctors, researchers, non-profits, foundations, research institutions, hospitals and advocacy groups,
for everyone touched by rare disease,
put on your blue jeans,
put on your blue jeans denim ribbon, and
vote for rare disease at Change.org – vote here ”25 Million+, It is time to care about rare disease.”
Ask family, friends, and strangers to vote. The first round vote ends at 5 p.m. (ET) on Thursday, February 18, 2010.
Right now we are in seventh place for “health care” ideas, we need to be in the top three ideas to make it to the finals.
Our votes can put rare disease into the top ten real American priorities – I say it’s time, don’t you? Start your World Rare Disease Day celebration today, vote for rare disease as a true health care priority. And pass it on (and on and on).
Catherine Calhoun
Parent Report from the Advancing Rare Disease Research: The Intersection of Patient Registries, Biospecimen Repositories, and Clinical Data Conference
January 19, 2010 by Catherine Calhoun
Filed under Bench to Bedside, Featured
Last week I spent 3 days in Bethesda, Maryland attending a registry “boot camp” with Genetic Alliance and a rare diseases registry conference hosted by the NIH Office of Rare Diseases Research.
From what I gathered, a “registry” for rare diseases can mean a simple contact list, a collection of clinical information input by patient and/or doctor, with or without a “repository” for collection of biospecimens like bone tissue that could come from my son during a surgery (sometimes the doctors call it surgical waste).
The point of the NIH conference was to get people together to start hammering out how to design a registry of registries – a registry that would include information on many rare diseases. Anonymous (“de-identified”) information could be searched (“queried”) for disease pathways, disease targets, effective treatments, overlapping health issues, etc. The goal is better treatments and cure through a big silo-busting knowledge share. Ideally, the NIH would have a huge amount of money for a project like this. There is no money, yet.
As I was sitting at the conference my stomach flipped in a sick way. I realized that even though we follow the most stringent expert recommendations for care for my son – no one has any idea if the current treatment will actually work better than the old treatments, or work at all. Current treatments might fail just as badly as past treatments, or worse. I could very well be subjecting my son to multiple surgeries for nothing. No one will ever know until someone starts collecting the information and then compares outcomes. What do you say to that – sorry the surgeries didn’t work Billy, you want an ice cream?
Aside from my mom of rare kid existential crisis, both events were fascinating. I really liked the cooperative vibe of Genetic Alliance with its BioBank. The NIH conference was packed with many many excellent speakers. I jotted down a few “to dos” –
(1) Pay attention to the NCI “caHUB” for specimen standards,
(2) Subscribe to prism@epi.usf.edu,
(3) Pay attention to the work of Treat-NMD,
(4) Spend a few hours reading through materials on AHRQ,
(5) Avoid mission creep (repeat: stay on mission), and
(6) Watch for NORD’s comprehensive list of current rare disease registries.
There were about 75 people at the boot camp and 250 at the NIH conference (with 100 wait-listed). This seems enough for a strong start. I know we are all “rare” on the molecular level (personalized medicine) – but semantics aside, if the rare diseases community came together and advocated for funds for a rare diseases “super-registry,” I have to think it could happen. And I promise to buy everyone an ice cream for each life-changing query.
:: Catherine Calhoun
P.S. I think we should invite Google to the next registry conference.
P.P.S. Many of the materials from the “boot camp” and the NIH conference should be available soon. Check “Genetic Alliance” and “NIH Office of Rare Diseases Research.”
“How To” – A Jean Ribbon for Global Rare Disease Day
January 4, 2010 by Catherine Calhoun
Filed under Featured, Global Genes Project
New York Times Reports on Cystic Fibrosis Advancements
December 23, 2009 by Catherine Calhoun
Filed under Bench to Bedside, Featured, News
For everyone planning to attend Uniting Rare Diseases, Advancing Rare Disease Research: The Intersection of Patient Registries, Biospecimen Repositories and Clinical Data, NIH/ORDR Workshop in Bethesda, Maryland on January 11-12, 2010 : Must read this fascinating article in the New York Times this week on cystic fibrosis, article here. Also, don’t forget to check out the Boot Camp offered by Genetic Alliance, link here.
:: Catherine Calhoun
