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Patient Empowerment Foundation

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Patient Empowerment Foundation

Our mission is to connect patients and the people who love them with a community that includes top researchers, medical experts, and experienced patients.

We are a not-for-profit patient organisation based in Geneva, Switzerland, and an affiliate of the Patient Empowerment Network in the US. We are here to help patients know they are not alone when facing a serious diagnosis. Our mission is to connect patients and the people who love them with a community that includes top researchers, medical experts, and experienced patients and family members, an

d partner patient organisations. The goal is to help everyone get the best care, and to feel more confident and live better along the way.

31/05/2018

My son was born with a rare condition 19 years ago, Alpha-1 Antitrypsin Deficiency, so I started finding out about the condition on the internet. In Spain there was a small patient association for Alpha-1 and the founder asked me if I wanted to get involved and take the helm, so I began working with patient organizations and healthcare professionals.

Fundación Lovexair. Enfermos respiratorios crónicos HIMSS Europe

“Empowerment through digital tools is still far away from citizens” May 21, 2018 Teresa Bau Leave a comment Shane Fitch () is the founder and director of Lovexair, a foundation that supports people affected by chronic and rare respiratory diseases. After ten years of working in digi...

30/05/2018

INFLUENCERS & HASHTAGS: See our recommendations for this month.

Bertalan Meskó (Berci): A Hungarian doctor, geneticist, author and speaker. He writes about the future of healthcare at The Medical Futurist and is the founder of Webicina which helps patients and physicians find medical news and advice they can trust medicalfuturist.com

Natasha Loder: healthcare correspondent of The Economist. She writes about pharma, medical science and technology. Natasha also does brilliant cartoons with a funny vision of motherhood.

“I think empowerment through digital healthcare tools is still far away from citizens,” says Shane Fitch (), mother of a child with a rare respiratory disease, patient advocate and digital health entrepreneur. In this interview, Shane explains her work to help patients with respir....

29/05/2018

When my support group visited a research lab, the discussion of proteomics, fibroblasts and microRNAs made about as much sense to me as Lewis Carroll’s nonsense rhymes. Yet the meeting confirmed my suspicion that the gulf between patients and researchers needs to be bridged.

via The New York Times

The gulf between patients and researchers needs to be bridged, even if we barely speak the same language.

28/05/2018

Joanne Taylor (), a secondary patient from Diggle (Manchester), explains how she uses Twitter to connect with other patients and doctors and to create awareness of breast cancer. Joanne has close to 12,000 followers, and she tweets from cancer conferences to get the news out for patients.

Breast cancer patient advocate Joanne Taylor shares how she uses Twitter to connect with other patients and doctors and to create breast cancer awareness.

25/05/2018

Join us on THE CANCER CONNECTION, a page connecting people affected by , , or concerned with it. Together, we make a difference https://www.facebook.com/thecancerconnection

Connecting people affected by cancer, living with cancer, or concerned with cancer. Together, we make a difference. Together, we can improve the prognosis.**We do NOT give official medical advice**

24/05/2018

Shane Fitch is the founder and director of Lovexair (Fundación Lovexair. Enfermos respiratorios crónicos), a foundation that supports people affected by chronic and rare respiratory diseases. After ten years of working in digital health she has developed together with a multidisciplinary team, a digital self-care program for all types of respiratory patients.

HIMSS Europe

23/05/2018

Welcome to our May Newsletter!

“I think empowerment through digital healthcare tools is still far away from citizens,” says Shane Fitch (), mother of a child with a rare respiratory disease, patient advocate and digital health entrepreneur. Shane explains her work to help patients with respiratory conditions at the Lovexair Foundation (Fundación Lovexair. Enfermos respiratorios crónicos) and how she is helping this community with digital tools.

22/05/2018

The opinion was almost unanimous among breast cancer survivors, with 96% of them saying that the program was appropriate for their needs, and 86% reported to be satisfied with the program. Seventy percent said they even learned about new physical activities.

Project MOVE, a program that gives financial incentives to breast cancer groups to encourage exercise, successfully increased physical activity among patients, a study shows

21/05/2018

What do the experts say about a patient’s sugar intake? Should it be avoided altogether? Myeloma experts, Tiffany Richards and Dr. Robert Orlowski from The University of Texas MD Anderson Cancer Center, discuss what dietary changes are recommended to live well with a myeloma condition and how treatments interact with certain foods. Watch now to find out more.

What do the experts say about a myeloma patient’s sugar intake? How do treatments interact with certain foods? Watch now to find out.

17/05/2018

When Ruth Schorr, daughter of Patient Power - a Cancer Community founder Andrew Schorr, was around 5 years old, she became aware that there was a another presence in her family: chronic lymphocytic ( ). Ruth shares the impact the disease had on her childhood, her relationship with her father, and how it affected her overall outlook on life. She explains how she learned how to not "sweat the small stuff" and offers her advice for children and young adults to help prevent the disease from becoming a "monster" in their lives.

Ruth Schorr, daughter of Patient Power founder Andrew Schorr, shares the impact of her father’s CLL on her childhood and how it has changed her outlook on life.

16/05/2018

Sajjad was diagnosed in 2002 with extremely rare , a cancer that is in the salivary glands. It happens to one in two million people, and he was told, at the time, only 30 percent survive two years. That was 16 years ago, and Dr. Iqbal is still alive and vibrant, having fought back the cancer and its subsequent spread to his lungs, bones and temporarily taking away his speech.

Do cancer statistics really matter? Read Andrew’s latest blog about what he learned from cancer survivor Sajjad Iqbal.

Adresse

Geneva

Webseite

http://powerforpatient.org/

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