PEN Partner Archives

MDS Foundation

The Myelodysplastic Syndromes Foundation was established by an international group of physicians and researchers to provide an ongoing exchange of information relating to MDS.

A major Foundation effort is the international information network. This network provides patients with referrals to Centers of Excellence, contact names for available clinical trials, sharing of new research and treatment options between physicians, and extension of educational support to physicians, nurses, pharmacists and patients.

In response to the needs expressed by patients, families, and healthcare professionals, they have established patient advocacy groups, research funding, and professional educational initiatives.

The MDS Foundation is a publicly supported organization, exempt from federal income tax under section 501(C)(3) of the IRS code.

HealthUnlocked

HealthUnlocked is the world’s largest social network for health, with 1 million members across the globe, and growing. We connect people with the same health conditions, where they can share experiences and get answers to questions about their chronic conditions and wellbeing needs – empowering people with knowledge for enhanced self-care.

Lazarex

Lazarex Cancer Foundation improves the outcome of cancer care, giving hope, dignity and life to advanced stage cancer patients and the medically underserved by providing assistance with costs for FDA clinical trial participation, identification of clinical trial options, community outreach and engagement. They provide resources for cancer patients who have been told they have no other options, but who are not yet done with their journey in life and refuse to give up.

  • Help patients of all ages and walks of life, with all forms of cancer.
  • Help patients take advantage of medical breakthroughs today, because they may not have a tomorrow.
  • Believe that the size of a patient’s bank account should not stand between them and the choices they make or the treatments they need.
  • Present clinical trials as an alternative to hospice care for those who want to remain engaged in their fight against cancer.
  • Aspire to improve cancer survival rates through screenings and early detection, with a focus on the medically underserved to address health disparities.

Health Content Collective

Health Content Collective specializes in developing content for online healthcare platforms. We work with brands to create high-quality, in-depth educational content, dynamic in-person and online events, and produce easy-to-understand marketing materials. Unlike an agency, Health Content Collective works directly with patients and caregivers, allowing us to better understand and assess their needs.

The Leukemia & Lymphoma Society

The Leukemia & Lymphoma Society (LLS) is the world’s largest voluntary health agency dedicated to blood cancer. The LLS mission: Cure leukemia, lymphoma, Hodgkin’s disease and myeloma, and improve the quality of life of patients and their families. LLS funds lifesaving blood cancer research around the world and provides free information and support services.

The Aplastic Anemia and MDS International Foundation

The Aplastic Anemia & MDS International Foundation (AA-MDS) is the world’s leading nonprofit health organization dedicated to supporting patients and families living with aplastic anemia, myelodysplastic syndrome (MDS), paroxysmal nocturnal hemoglobinuria (PNH),  and related bone marrow failure diseases. The Foundation provides answers, support, and hope to thousands of patients and their families around the world.

Moffitt Cancer Center

Moffitt Cancer Center has made a lasting commitment to the prevention and cure of cancer, working tirelessly in the areas of patient care, research and education to advance one step further in fighting this disease.

The Conference Forum

The Conference Forum is a life science industry research firm that develops conferences primarily around how to get therapeutics to patients faster. We examine and challenge the complex ecosystem of drug development and delivery, bringing good ideas together from a variety of sources to help advance clinical research with common goals that are patient-focused.

The Conference Forum presents strategic level conferences, both public and private, as well as developing focus groups and advisory boards for professionals in the life science and healthcare industries. We currently offer conferences for pharma/biotech professionals including R&D leaders, CEOs, business development/licensing, medical affairs/safety, chief patient officers/advocates, clinical innovation champions, investors and drug delivery specialists. We are committed to creating the best content, exchange of ideas and solutions among peers, as well as providing high quality networking.

Intake.Me

Founded in 2013, Intake.me is an innovative digital health company located in Los Angeles building a patient­ and doctor engagement platform that lets patients capture all their health matters and share it with their entire health care team. Health care consumers, such as patients and caregivers, can track symptoms, conditions, diagnoses and store medical records in their private Intake.me account. Health care professionals can request that data via an electronic intake record from their patients before the medical encounter so that the limited time at each visit can be used more effectively and support shared decision making. Intake.me’s mission is to empower all your health matters through technology, education, and community. Intake.me launched the fast-growing health education site, ePatient101.com, with e-learning classes on patient empowerment, caregiving, and chronic disease management. Intake.me also hosts the popular Empowered Patient Chat #patientchat on Twitter.

“At Intake.me we’re passionate about empowering people in their health. As a cancer survivor myself, I understand the burden placed on patients managing multiple doctor visits and hundreds of medical records, tests, prescriptions, and more. With Intake.me, you can capture and track all your health matters in your own private, secure account and share them with your healthcare team at check-in. Win-win for both doctor and patient!” – Darla Brown, Founder

Cancer Support Community

The Cancer Support Community is an international non-profit dedicated to providing support, education and hope to people affected by cancer. Likely the largest employer of psychosocial oncology mental health professionals in the United States, CSC offers a menu of personalized services and education for all people affected by cancer. Its global network brings the highest quality cancer support to the millions of people touched by cancer. These support services are available through a network of professionally-led community-based centers, hospitals, community oncology practices and online, so that no one has to face cancer alone.

LUNGevity

We focus on research because the link between research spending and improved survival is clear. Survival rates have dramatically improved for colorectal, breast, and prostate cancers over the last several decades in step with the exponential growth in their research spending. Our goal is to accelerate progress for lung cancer in the same way, in order to dramatically improve on the current 17% five-year survival rate.

To date, LUNGevity has funded 110 research projects at 57 institutions in 23 states. LUNGevity research investments focus on early detection, because survival rates rise when lung cancer is detected while still localized. We also focus on more effective treatment approaches—getting the right treatment to the right patient at the right time to help people with lung cancer live longer and better.

Our projects are translational, moving basic research from the lab to patient treatment. We fund the projects most likely to have the greatest benefit for patients in the near term. Thanks to our Scientific Advisory Board—a group that includes leaders in early detection, genomics, proteomics, immunotherapy, biostatistics, and thoracic surgery—research project applications are rigorously reviewed in a robust, transparent process and then funded projects are carefully monitored. Through ongoing work with researchers across the various institutions, LUNGevity maximizes the progress and impact of ongoing studies.

LUNGevity also provides a community of empowerment, support, and hope for everyone affected by lung cancer through our extensive educational resources, online peer-to-peer support, and in-person survivorship programs, as well as more than 80 grassroots awareness and fundraising events held from coast to coast each year.

CanCare

CanCare, Inc. is a 501 (c)(3) nonprofit organization that provides one-on-one, personal support to cancer patients and their loved ones by matching them with a survivor or caregiver of the same type of cancer they are experiencing. CanCare’s services are confidential and provided without charge.

Stupid Cancer

Stupid Cancer, a 501(c)3 non-profit organization, is the dominant healthcare brand for millions affected by young adult cancer.

Our innovative and award-winning services serve as a bullhorn to propel the young adult cancer movement forward and our charter is to ensure that no one affected by young adult cancer go unaware of the age-appropriate support resources they are entitled to so they can get busy living.

Seven times more common than all pediatric cancers combined, young adult cancer (age 15-39) is largely unknown in the war on cancer with 72,000 new diagnoses each year. That’s one every eight minutes. This is not OK! This neglected group—now millions strong—has limited resources, inadequate support, and, more importantly, a lack of awareness and understanding from the community around them.

PV Reporter

PV Reporter was created to fill a gap in the MPN patient community providing “easy access” to pertinent information on Polycythemia Vera (PV),  Essential Thrombocythemia (ET) and Myelofibrosis (MF).  These disorders are Myeloproliferative Neoplasms (MPNs), a closely related group of blood cancers where the bone marrow cells that produce the body’s blood cells function and develop abnormally.  If you are a newly diagnosed patient or researching MPNs, make PV Reporter your starting point.  While many existing MPN websites provide excellent content, they tend to be internally focused or lack internal or external search capabilities.  PV Reporter solves that problem with MPN Search – retrieving exactly the information you are looking for!

MPN Research Foundation

The MPN Research Foundation has a single goal: to stimulate original research in pursuit of new treatments — and eventually a cure — for polycythemia vera, essential thrombocythemia and myelofibrosis, known collectively as myeloproliferative neoplasms (MPN).