Updates from ASCO and ESMO 2021 Add to Successes in Hodgkin Lymphoma Research and Treatment

Updates from ASCO and ESMO 2021 Add to Successes in Hodgkin Lymphoma Research and Treatment By Kathleen Hoffman, PhD, MSPH In 1832 Sir Thomas Hodgkin described a morbid condition of the glands and spleen which in 1865 was named Hodgkin disease by Samuel Wilkes. It was a fatal disease. Yet it has become, as this Inspire patient describes, highly treatable.1 my first oncologist, trying to reassure me and make me feel better, told me that if someone said to him it was DEFINITE that he had to get cancer, but he could choose what kind, he would, [...]

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Oct 2021By |0 Comments

Out of Nowhere: Kidney Cancer

Out of Nowhere: Kidney Cancer By Kathleen Hoffman, PhD MSPH Of the estimated 1.9 million cancers diagnosed each year in the US, around 4 percent are kidney cancers, the most common are renal cell carcinomas (RCC). Around 76,000 new cases will occur in the US in 2021, 48,0000 in men and 27,000 in women. Kidney cancer can occur at any age, but is most likely to be diagnosed between the ages of 55 - 75.1,2,3 Out of the Blue Patients and caregivers describe sudden and unexpected diagnoses of kidney cancer: My husband was just newly diagnosed [...]

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Aug 2021By |0 Comments

The Kidney Cancer Support Community on Inspire

The Kidney Cancer Support Community on Inspire By Kathleen Hoffman, PhD MSPH Of the over 1 million cancers diagnosed each year in the US, around 3 percent are kidney cancers.1 This relatively rare cancer is twice as likely to develop in men as women. Around 73,000 new cases will occur in the US in 2019, about 44,000 men and 29,000 women.2 Kidney Cancer Association Kidney Cancer Support Community on Inspire Started in 2014, the Kidney Cancer Association Kidney Cancer Support Community on Inspire has grown to approximately 2600 members; 64 percent are female, 36 percent male. [...]

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Sep 2019By |0 Comments

How R&D Teams Can Use Patient-Centricity for Clinical Trial Optimization

How R&D Teams Can Use Patient Centricity for Clinical Trial Optimization By Monica St. Claire In 2014, Tufts Center for the Study of Drug Development performed a comprehensive assessment of the use of social media and digital technology in clinical research. This forward-thinking study revealed that pharmaceutical, biotechnology companies and contract research organizations (CROs) had not implemented strategies to effectively utilize and capitalize on the patient and caregiver content available.1 Today, Inspire’s products and services address these clinical trial optimization essentials. Specifically, our tools provide pharmaceutical and biotechnology companies’ research and development (R&D) teams as well [...]

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Aug 2018By |0 Comments

Video Vignettes: Through Their Own Eyes: Thyroid Cancer

Video Vignettes: Through Their Own Eyes: Thyroid Cancer By Monica St. Claire Inspire asked its members if they would share their stories by video in a project called Through Their Own Eyes. Many did, and we have shared a number of these videos.(See links below)* Today, we share a video by a member of the ThyCa: Thyroid Cancer Survivors Association  Thyroid Cancer Connect Support Community on Inspire who, together with other members, wrote a book, After the Diagnosis: Medullary Thyroid Cancer. Thyroid cancer is a rare cancer.  The American Cancer Society estimates in 2018 there will [...]

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Jun 2018By |0 Comments

Launching communities with Inspire: The Pancreatic Neuroendocrine Tumor (PNET) Support Community

Launching communities with Inspire: The Pancreatic Neuroendocrine Tumor (PNET) Support Community For patients and caregivers facing rare cancers, finding others going through the same experience is challenging.  Yet, communicating with others who have “been there” is essential support. This can be especially true when statistics and online information about rare disease -  out of context -can be frightening. In 2011 Inspire’s moderation team found over 2900 mentions of carcinoid and over 200 mentions of neuroendocrine tumor in posts across all the cancer communities of Inspire.  Patients, caregivers, and others affected by pancreatic [...]

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Apr 2018By |0 Comments