Posted November 8th, 2011 by


Nonprofit and “Not Just for Profit” Announce Collaboration at PartneringForCures Event

NEW YORK, NY – November 7, 2011 – Today, PatientsLikeMe and R.A.R.E Project, a nonprofit advocacy and support group for patients with all rare diseases, announce a new partnership to find and connect 1 million rare disease patients to share and learn everything possible about their conditions.  The organizations, co-presenting at the PartneringForCures event today in New York, are launching an international rare disease awareness campaign in 2012.

PatientsLikeMe's New Partner, The R.A.R.E Project

“There are 35 million patients in the U.S. with 7,000+ rare diseases and we want to find them, connect them and support them in sharing and learning by their specific disease and across all rare diseases,” says Dean Suhr, Chief Innovation and Community Development Officer at R.A.R.E.  “We’re excited to work with PatientsLikeMe because their open patient registry allows patients to contribute to research, while getting immediate benefits, like improved quality of life, from sharing this information with others.”

The goal of this collaboration between R.A.R.E and PatientsLikeMe, an online health community that started in 2005 for rare disease patients and is now open to everyone, is to allow for better shared learning and acceleration of discovery by rapidly connecting patients to researchers, companies, nonprofits and patients like them. The partners will combine resources to provide patients with the opportunity to make online and local in-person connections, engage nonprofits and local specialists, and contribute their health data to the open patient registry at PatientsLikeMe. Unlike other registries, PatientsLikeMe allows patients to query the data to compare their medical data to others with similar diseases, symptoms, or therapies so they can also compare their data across other diseases.

“The key to accelerating research for any patients, although particularly powerful for those with rare conditions, is to have efficient access to well characterized patient populations willing to be part of research,” adds Jamie Heywood, Co-founder and Chairman of PatientsLikeMe. “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. We will change that.”

For more about the R.A.R.E Project, including current awareness campaigns, go to:  For patients and nonprofits that want to join PatientsLikeMe, go to


The R.A.R.E. Project exists to raise rare disease awareness, unify and empower a vibrant global rare disease community, and fund innovations to support ‘in-their-lifetime’ rare disease research.


PatientsLikeMe® ( is the world’s leading online health data sharing platform. PatientsLikeMe® creates new knowledge by charting the real-world course of disease through the shared experiences of patients. While patients interact to help improve their outcomes, the data they provide helps researchers learn how these diseases act in the real world and accelerate the discovery of new, more effective treatments. [Follow company news on and]

PatientsLikeMe member lscanlon


  1. I have been a member of plm for quite a while.When my neuro retired my new one informed me that I didn’t have MS but have had neuromyelitis optica for the past 8 years!! I was wondering if this disease would be one of the rare diseases that would be followed in this partnership with rare diseases? thanks pete

  2. This is so great that this happeneded. The more collaboration that is done possibly will lead to bigger and better health issues for everyone involved. My daughter who is 14 and was injured in a soccer game last October ended up getting RSDS and POTS which at that time I had no idea what that was. Now we have created a facebook fan page to help support others as there is no support for kids on this and trying to find information you really have to do your research which there needs to be more of since there is no cure for these two syndromes. Thank you again for getting together.

  3. […] Connecting with other patients diagnosed with AIH is the reason I’m blogging about autoimmune hepatitis.  I wanted to connect with other AIH patients to hear about your AIH journey.  I wanted to share my AIH journey and information with you.  There’s another good resource for connecting with patients diagnosed with rare diseases.  Here’s the link to The Value of Openness: […]

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