14 posts from February, 2012

Rare Disease Day: Together, We Can Do More

Posted February 29th, 2012 by

All Around the World, People Are Observing Rare Disease Day Today

Today is the fifth annual observation of Rare Disease Day, an international event recognized in more than 50 countries.  (Learn about US activities here, including a day of lobbying on Capitol Hill for the ULTRA Act, which aims to stimulate the development of treatments for rare diseases.)

What’s a rare disease, you ask?  It’s a condition that affects less than 200,000 people in the US – or less than 1 in 2,000 people in Europe.  There are more than 7,000 such disorders (80% of which have identified genetic origins), and collectively, they affect an estimated 350 million people worldwide.  Yet because of the lower prevalence of the individual diseases, they often receive little attention.

The 2012 Rare Disease Day theme is “Solidarity,” highlighting the importance of collaboration and support among patients with rare diseases.  Despite the wide variability of symptoms, patients with rare diseases face many of the same challenges, which may include a difficult diagnosis process, isolation, high cost drugs (if they exist), lack of information and inequities in the availability of treatment and care.

At PatientsLikeMe, we are committed to bringing patients together and speeding up the pace of medical research.  That’s why we partnered with the R.A.R.E Project last November to find and connect one million patients with rare diseases.  “It’s terrifying to think you’re alone and manage your rare illness with a doctor who might not have ever seen another patient like you,” says PatientsLikeMe Co-Founder Jamie Heywood.  “We will change that.”

If you know anyone with a rare disease, please encourage them to join PatientsLikeMe and help create a well-defined patient registry for the benefit of both patients and researchers. Also, PatientsLikeMe members—with or without a rare disease—can show solidarity by following the R.A.R.E Project’s profile.


A Peek at the February Newsletter for Members

Posted February 27th, 2012 by

What kinds of things do we cover in our monthly newsletters for members? Take a look at the excerpt below from our February edition. Also, in case you didn’t know, anyone – whether a PatientsLikeMe member or not – can view our current and past newsletters in our Newsletter Archive. See what we’ve been up to recently, and if you are member who’s not opted in to the newsletter, sign up today.

MONTHLY MUSINGS

Ever feel like you’re so busy seeing specialists that it’s easy to forget about your annual physical?  In addition to checking up on your overall health, an “annual” is a great time to monitor your blood work – such as cholesterol and Vitamin D levels – which you can now record on your PatientsLikeMe profile.  It’s also a good opportunity to discuss any new concerns with your primary care physician (PCP).

But with only a few minutes with your PCP and a whole year’s worth of health matters to cover, it can be hard to remember what’s happened between visits, and even harder to get to everything that’s important. Fortunately, your printable and customizable Doctor Visit Sheet (DVS) can help.  Bring this complete record with you to jog your memory and get your doctor updated quickly.

You Can Even Email Your Doctor Visit Sheet to Your Care Team Before Your Appointment

The DVS now includes your InstantMe history along with all the helpful notes you’ve made about things like treatment changes and new or repeat symptoms.  Bottom line: the more you use InstantMe, the more details you’ll have about how you’ve been feeling – and why.

Are you due for an “annual”?  Customize and print your DVS here.

Kate, Emma, Liz, Jeanette & Sharry

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JOIN THE CONVERSATION

What’s happening in the forum?  Check out some of these active threads below.  Then jump in with your own questions and answers.

Need help with something on the site?  Visit the PatientsLikeMe Site Help Room for answers from veteran members.

PUTTING THE “INSTANT” IN INSTANTME

A Screenshot of the InstantMe Survey (Which Asks "How Are You Feeling?") on Your Smartphone

Did you know there’s a mobile version of InstantMe that’s now available for iPhone, iPad and, most recently, Android users? We hope it’s a convenient way to record how you’re feeling on the go – whether you’re in the line at the store or watching your child’s soccer game.  Stay tuned as we continue to improve Mobile InstantMe in 2012.