nonprofit

LUNGevity Foundation and PatientsLikeMe Unite for New Partnership

Organizations Team Up to Enhance Patient Network for People Living with Lung Cancer, Expand Reach for Research Washington, DC (October 30, 2014) – Today, LUNGevity Foundation, the leading lung cancer nonprofit, and PatientsLikeMe, the leading patient network, announced a joint initiative to help people diagnosed with lung cancer. The organizations are collaborating to increase the number of lung cancer members on PatientsLikeMe so that more patient-reported information can potentially guide research on the condition. LUNGevity will also continuously provide information on lung cancer to enrich PatientsLikeMe’s content, and in the longer term, will become the first nonprofit to integrate and display dynamic data from PatientsLikeMe on its own website. PatientsLikeMe is a unique tool that helps individuals living with lung cancer to learn from others. Members can gain a real world understanding of lung cancer treatments and symptoms, track their condition, and contribute health data for research. “Our work with LUNGevity aims to create the premier lung cancer registry in the world, and to make a lasting impact on research and on those who live with the condition every day,” said PatientsLikeMe Executive Vice President of Marketing and Patient Advocacy Michael Evers. The initiative will provide a complementary information-gathering resource …

LUNGevity Foundation and PatientsLikeMe Unite for New Partnership Read More »

Rising Together: A PatientsLikeMe Year in Review (Part VI: Nonprofit Partnerships)

Why does it feel like “second nature” for PatientsLikeMe to create innovative partnerships with nonprofits?   Nonprofit organizations are dedicated and centered around putting patients first – a concept that’s near and dear to us too.  In 2010, we focused on refining our nonprofit partnerships to bring more events and programs to patients, both online and off.  As you know from our blog last week, more patients like you sharing data on PatientsLikeMe leads to more learning and we are thankful to our nonprofit partners for helping us spread the word to bring in more patients.  Additionally, the more patients like you who know about and participate in nonprofit events and programs, the more funds raised for your research and awareness of your particular disease. Below is a video and some details about how we worked with our nonprofit partners in 2010: We worked closely this year with the Myelin Repair Foundation on two of their new initiatives: Where are the Cures? and Breakthrough to Cures. We offered you a chance to ask questions and comment on their groundbreaking Patient Manifesto in our hosted forum, and blogged about their innovative brainstorming game designed to spark conversation about accelerating the pace of …

Rising Together: A PatientsLikeMe Year in Review (Part VI: Nonprofit Partnerships) Read More »

Tell The World: A PatientsLikeMe Year in Review (Part V – Marketing)

With every new member at PatientsLikeMe, there is more data generated for research, more dialogue about individual experiences, and a more expansive support network.  Additionally, with more patients we can become the world’s largest and loudest representative of the patient voice.  To that end, our job in marketing is to share your stories and tell the world about our community to bring in more patients. Here are highlights of some of the work we did this year to promote your voice and attract the 32,000+ new members we welcomed to the community in 2010.  (Enjoy the video recap below as well.) Social Outreach With a full year under its belt, 2010 was a big year for the PatientsLikeMeInMotionTM program. With slick new t-shirts and a new sign-up form, the program just about doubled in size from 38 teams in 2009 to 60 teams in 2010.  More than 1,000 people were rocking PatientsLikeMe t-shirts for their disease awareness walks this year and the company donated $14,800+ in our members’ names to almost 50 nonprofit organizations.  (More about our nonprofit partnerships and work we’ve done with them is coming from Molly Cotter next week).  Finally, we launched our PatientsLikeMeinMotionTM Flickr page, which …

Tell The World: A PatientsLikeMe Year in Review (Part V – Marketing) Read More »

Will Openness Bring About a Breakthrough?

Share your thoughts in an innovative online event with our partner Myelin Repair Foundation. Our Openness Philosophy is centered around the idea that patients sharing their real world health data allows for collaboration on a global scale; that it will accelerate new treatments; and that it can change our health care system.  In this same spirit of openness, The Myelin Repair Foundation (MRF) has recently announced a new collaborative event. This fall MRF is inviting scientists, industry experts, patients, policy makers, and other big thinkers inside and outside of the medical research enterprise and health care industry to two online “idea sourcing” events called “Breakthroughs to Cures”. These events are designed to explore creative ways to accelerate the pace of medical research and shorten the time to market for new medicines for all diseases. The two events will take place respectively on October 7-8 and November 9-10  and there will be as many as 600 individuals from a wide range of backgrounds in online conversation threads that are expected to identify new strategies for accelerating research.  Here is a chance for patients to come to the table, contribute your ideas, your experiences with illness, and your sense of urgency to …

Will Openness Bring About a Breakthrough? Read More »

U.S. Transplants Games – Here We Come!

A few weeks back, we were delighted to join the National Kidney Foundation of New England at their Transplant Games Team Meeting to give a demonstration of the PatientsLikeMe Transplants Community. Later this week, we’ll be joining Team Mid-New England as their official t-shirt sponsor as they “take the field” for the U.S. Transplants Games in Madison, Wisconsin. As part of our demonstration, we focused a lot on the value of creating a patient profile. Everything you’d want to know about your transplantation journey is charted on the profile to make it easier to visually see what’s going on with you before, during and after your transplant.  Many of our patients print out their profile charts and share them with their doctors.  Beyond the individual learning, the power of the patient profile is that it is shared with the entire community.  The treatment and symptom information you enter gets rolled up into community reports so you can see if what you’re experiencing is similar to the experiences of others, and you can help others do the same. At the end of the session, we had a lot of great questions.  Here are a few: Can you chart how exercise is …

U.S. Transplants Games – Here We Come! Read More »

ALS Awareness Month: ALS Patients Are “In Motion”

Did you know there are more than 4,500 patients in the PatientsLikeMe ALS community sharing and learning from each other every day?  Outside of our community, patients are also teaming up to raise awareness and money for ALS research. Here is a highlights video of ALS members who have participated in our PatientsLikeMeInMotionTM program, stepping up to give back to the community.

PatientsLikeMe Teams Up With The National Kidney Foundation Serving New England

We are proud to announce a new partnership between PatientsLikeMe and the National Kidney Foundation serving New England.  In the beginning stages of developing the PatientsLikeMe Transplant Community, we worked together with the National Kidney Foundation serving New England to give interested patients an opportunity to share their transplant journey and help shape this new community.  During this beta phase of the community development, kidney recipients alongside lung, heart and liver transplant recipients,  became incredibly engaged and were excited to share their experiences.  Thanks to all those patients who stepped up from the start, as well as those who have since joined our site!  With more than 1,300 members (to date), the Transplants Community is creating new knowledge about patients’ real-world transplantation journeys.  A special thanks also goes out to the National Kidney Foundation serving New England for partnering with us early on to spread the word. Through this exciting partnership, we will continue to work with the National Kidney Foundation serving New England to find ways for everyone to “give back.”  PatientsLikeMe will be giving back through its PatientsLikeMeInMotionTM program designed to support members participating in offline fundraiser events.  Similarly, we will be joining forces (as an official t-shirt …

PatientsLikeMe Teams Up With The National Kidney Foundation Serving New England Read More »

Scroll to Top