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ECRD participants consult postersThe 7th European Conference on Rare Diseases and Orphan Products (ECRD 2014) will take place 8 – 10 May 2014 in Berlin, Germany. Up to 700 members of the European and international rare disease community are expected to attend.

The call for poster abstracts is now open.

Conference posters give those planning on attending the ECRD an opportunity to communicate their activities. Selected posters will be displayed in a dedicated space during the conference with specific poster sessions held each day. EURORDIS encourages patient organisations, academics, healthcare professionals and any other interested parties to submit a poster.

ECRD 2014 posters that address any of the following themes are particularly encouraged: Improving Healthcare Services; Knowledge Generation and Dissemination; Research from Discovery to Patients; State of the Art and Innovative Practices in Orphan Products; Emerging Concepts and Future Policies for Rare Disease Therapies; Beyond Medical Care; Rare Disease Patient Groups Innovations; Other topics that you would like to communicate to the rare disease community.

The three most outstanding posters (to be determined by the ECRD Programme Committee) will be awarded a special certificate.

Poster abstracts must be in English language. Please consult the Guidelines for full details.

The deadline to submit a poster is: 15 December 2013Authors of selected poster abstracts will be notified in January 2014.

We look forward to your active participation!

You Are the Expert

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Congressman Tim Murphy of Pennsylvania has a message for the cystic fibrosis community: members of Congress want to know the issues and problems that people with CF face. “No one knows these issues better than you.”

He’s absolutely right. That’s why it’s so important that you join Make Every Breath Count.

 

Sign up for Make Every Breath Count

Make Every Breath Count is the CF Foundation’s national advocacy campaign, during which advocates like you inspire action in our fight against CF by meeting with their members of Congress in their hometowns.

You can help ensure that we are able to continue vital CF research, that new therapies are approved quickly and safely, and that people with CF have adequate coverage to go to their care center and access their treatments.

Congressman Murphy says it best: elected officials are “depending upon you to be the ones to tell us” about these important issues. You are the expert.

It’s easy to get involved and we will help you every step of the way!

Thank you for all that you do. Together, we will continue to make a difference in the lives of all people with CF.

Sincerely,

Cystic Fibrosis Foundation
publicpolicy@cff.org

INVISIBLE ME!

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INVISIBLE ME!

BIG brown eyes and young, smooth skin

in places where people can see,

at least….

Great sense of style,

long hair, bright smile,

She seem fine,

all simply divine,

so you turn a blind eye,

don’t give a care.

But on the inside

where pain lies,

small hurts are magnified.

You ask me why

I lay in bed all day and cry

If you were inn my shoes….

looking good, but feeling miserable,

you’d know exactly how I feel

when I say I am  invisible.

Its truly hard to live with a rare disease, rare meaning…… unusual…. uncommon… not often talked about. That’s why I feel that I live a life of invisibility. Living with a rare disease like Sickle Cell, I don’t often share things like my love for fashion, good books or great movies; the pain that has taken over my life.  I have to constantly explain things, like why I am parked in a handicap parking space, or why I am wearing oxygen. However, I have become a great teacher and advocate due to the lack of awareness for Sickle Cell disease.

We all want to live a life of purpose. Sometimes, it’s those darkest times in our life that we find our purpose. At least that’s my story. It was through my pain that I found my purpose, which helps me to persevere. It’s important to connect with people who can relate to what you are feeling when living life with a rare disease. That’s how you will gain the strength to instill perseverance!

Join our online Facebook Chat Sunday, September 2, at 5:00pm EST. Follow Dominique on Twitter or on her website at http://www.sickle.us

Pharma’s Use …

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Pharma’s Use of Infographics

By Eileen O’Brien

In the past year, the use of infographics has exploded. In fact, there are entire websites and search engines devoted to them. If you aren’t sure what I mean by the term “infographic,” I’m referring to graphically interesting representations of data. Ideally, infographics (short for information graphics) present complex information in an easy-to-understand visual format. If you’d like to learn more, here’s a post on the history of infographics.

Nonprofit organizations have used infographics to increase awareness of diseases ranging from pancreatic cancer to lupus. I also found a lot of interactive agencies, design companies and newspapers creating wonderful infographics to explain health topics. The FDA even uses them. Here’s one explaining cholesterol and another on understanding generic drugs. But I only found one pharmaceutical company using them.

After a general search for pharma and infographics, I searched a few diseases where the industry has funded a lot of advertising and education: high cholesterol, diabetes and insomnia. I was surprised that the only company I could find utilizing infographics was Sanofi. They used the tool to nice effect for diabetes awareness and to highlight women pioneers in diabetes.

What prompted this search was the recent creation for our client, Lundbeck, of an infographic on acute intermittent porphyria (AIP). This rare disease is called “the little imitator” because so many of its symptoms resemble those of many common conditions. Many AIP patients are misdiagnosed, and increasing awareness about this disease is essential. I may be biased since I work with the team that designed it, but I feel this infographic expresses the key points in a way that’s appealing to the target patient audience. I think that using infographics for disease education is a great tactic for biopharma companies. They can help patients and families understand complex medical conditions and are also easy to share.

Perfect for Pinterest
Infographics are perfect for sharing on the new social network Pinterest. In fact, Craig DeLarge from Novo Nordisk talks about this topic in this blog post, “Do you need an infographics strategy?” He writes, “More of our website content might be consumed more regularly and intently, if designed in more interesting infographic formats, versus the prose/image approach that is the current fashion.” Infographics could be used by biopharma companies for a variety of communications–for example, an infographic to explain the issue of counterfeit drugs. As the title suggests, DeLarge recommends taking a strategic approach to the tool. Novo Nordisk is using Pinterest but, as of today, they don’t have any infographics pinned to their board. Neither does Bayer’s Pinterest board.

Did I miss other pharma companies using infographics? I have a feeling there are some out there, so please comment below if you have an example.