10 posts from February, 2015

Day-by-day, hand-in-hand

Posted February 28th, 2015 by


All around the world, everyone impacted by a rare disease is taking everything day-by-day. But they can take each day hand-in-hand with the help and support of others. Today, on Rare Disease Day (RDD), EURORDIS (Rare Diseases Europe) and its global partners are calling on everyone to lend a hand to anyone affected by a rare disease.

RDD’s international theme is “Living with a rare disease” because every patient’s story and needs are different, and only by sharing our experiences and raising awareness can we all hope to improve the lives of those living with a rare disease. It’s also about the million of parents, siblings, grandparents, aunts, uncles, cousins and friends that are impacted and who are living day-by-day, hand-in-hand with rare disease patients.1

Check out the official video below:

According to the Global Genes Project, there are 350 million people living with a rare disease around the globe. Just how many is that? If you gathered those people into one country, it would be the third most-populous country in the world. There are more than 7,000 identified rare diseases, from skin conditions to progressive neurological disorders, and more are being discovered every day.2 Here’s how you can get involved in spreading the word:

Rare diseases have a personal connection with PatientsLikeMe – our co-founders’ brother, Stephen, was diagnosed with ALS in 1998, and their family’s experiences with the condition led to the beginning of PatientsLikeMe. In 2012, we partnered with the Global Genes Project to create the RARE Open Registry Project to help those diagnosed find others like them in one of the over 400 rare disease communities on the site, and launched the first open registry for people with alkaptonuria (AKU) with the AKU Society in early 2013. We also accelerated our focus on enhancing the idiopathic pulmonary fibrosis (IPF) community through a collaboration with Boehringer Ingelheim. And now, the IPF community on PatientsLikeMe is the largest open registry with more than 3,700 members …and counting.

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1 http://www.rarediseaseday.org/article/theme-of-the-year-living-with-a-rare-disease

2 http://globalgenes.org/rare-diseases-facts-statistics/


Patients as Partners: Hallucinations and Parkinson’s disease questionnaire results

Posted February 26th, 2015 by

It’s time for another Patients as Partners post, and today, we’re happy to share the results of the Hallucinations and Parkinson’s disease questionnaire.

In March 2014, more than 500 PatientsLikeMe members living with Parkinson’s disease (PD) took part in an Open Research Exchange (ORE) questionnaire about their condition. They worked with Dennis Chan and Ruth Wood from the University of Cambridge to understand a symptom called an extracampine hallucination, which is the sense of a presence beside or behind you even when there’s nothing or nobody there. So, unlike visual hallucinations, the presence can only be sensed or felt, not seen.

Everything the community shared will help researchers develop a new tool to better measure this type of hallucination and alert doctors and care teams to ask about this symptom earlier rather than later. Read the results here.

What’s ORE all about again? PatientsLikeMe’s ORE platform gives patients the chance to not only check an answer box, but also share their feedback on each question in a researcher’s health measure. They can tell our research partners what makes sense, what doesn’t, and how relevant the overall tool is to their condition. It’s all about collaborating with patients as partners to create the most effective tools for measuring disease.

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