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RARE INSIGHTS

VitalTrax announces availability of Wing

18/10/2017

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Wing provides an Open Table like experience to patients by managing the trial enrolment process
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​September 6, 2017 (Philadelphia, PA) – VitalTrax today announced availability of Wing, a Clinical Trial Network, that gives patients, caregivers and physicians an OpenTable like experience in finding and enrolling in clinical trials. It is a first of its kind solution that is optimized for patients’ experience. Wing contains information for over 55,000 clinical trials currently enrolling giving patients a single destination.
 
Wing provides trial sponsors and research sites the ability to publish and promote their trials so patients can easily find them. It also gives the research sites the tools to interact with and enrol patients. By addressing the unique needs of the entire eco system – patients, research sites and sponsors – Wing creates a seamless Clinical Trial Network that facilitates enrolment and participation of patients in clinical trials. 
 
“VitalTrax team has decades of experience in building secure and compliant solutions for the pharmaceutical industry. Wing complies with the HIPAA and FDA regulations to ensure patient’s data is secure and shared with only the healthcare providers they chose. We have worked closely with patients and patient advocates to ensure the solution is easy to use and addresses patients’ needs” said, Todd Kueny, cofounder and CTO of VitalTrax.
 
“Finding a clinical trial in Wing is simple and easy. It also helps to manage the application process which can be a stressful and arduous process for patients. It meets a critical need for patients today who are looking to find the right clinical trial for them” said T.J. Sharpe, a cancer survivor and patient advocate who serves on the advisory board for VitalTrax.  
 
“Our first and foremost objective is to create a great experience for patients and for that we work closely with patients and patient advocates to design our solution. Wing meets a critical need for patients – to find and enrol in clinical trials – efficiently. It also gives research sites and sponsors the ability to easily publish and promote their trials to encourage enrolment.”  said Zikria Syed, cofounder and CEO of VitalTrax.
 
About VitalTrax
 
VitalTrax volunteer and stay involved during the trial. For more information, please visit vitaltrax.net.
 
 
MEDIA CONTACTS
Zikria Syed – CEO, VitalTrax
215-972-6700 x3214
zsyed@vitaltrax.net
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Award-winning photographer Rick to celebrate natural beauty at the UK albinism conference

18/10/2017

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Award-winning international photographer and campaigner Rick Guidotti will be a key speaker at this year’s Albinism Fellowship Conference, the biggest gathering of people living with this rare genetic condition in the UK and Republic of Ireland.
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Photo Credit  Rick Guidotti

Rick, Founder and Director of Positive Exposure (https://positiveexposure.org/) has taken images of people with albinism in several countries to help deepen awareness and understanding of the condition globally, along with using photography to raise their confidence and self-esteem. Albinism, usually characterised by white hair, pale skin and severe sight impairment, affects around 3,000 people living in the UK and Republic of Ireland.  

​Positive Exposure, the not-for-profit organisation which Rick founded in 1998, addresses issues concerning many different genetic conditions, including albinism. Rick will be attending the Albinism Fellowship charity’s Family Conference in Derbyshire from 20-22 October where he will run a session for delegates.  

Previously a high profile fashion photographer, Rick worked in New York City, Milan and Paris for clients such as Yves St Laurent, Revlon, L’Oréal, Elle, Harpers Bazaar and GQ. During a break from a photo session, by chance he encountered a girl with pale skin and white hair standing at a bus stop in Manhattan, New York City – a girl with albinism.

When he returned home, Rick started to learn everything he could about albinism, people with genetic differences and how they are treated, and examine his own attitudes. This led to him forming Positive Exposure.  

​Rick said: “I’m really looking forward to seeing all of my friends in the Albinism Fellowship again. I believe that my relationship with the fellowship, which began in 1999, has firmly shaped the artist I am today and continues to inspire the work of Positive Exposure globally.”  

Roselle Potts, Chair of the Albinism Fellowship, commented: “We’re delighted to welcome back Rick Guidotti to the Albinism Fellowship Conference; he is a truly inspiring speaker and someone who has made real strides in helping people celebrate and embrace their albinism.  

​“We look forward to hearing more about Rick’s recent experiences with Positive Exposure around the globe. Not only are his images striking, but Rick’s work is all about celebrating the natural beauty of people with genetic conditions who may also be visually distinctive. Positive Exposure uses photography and other media to improve the confidence and self-esteem of such people, sometimes quite drastically, and we fully support that.”  

The theme of this year’s Albinism Fellowship conference, which is for registered members and their families only, is ‘Look on the bright side’. This is about encouraging people with albinism and their families to take a positive view of the future, despite the daily challenges of living with their condition.

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Photo Credit Rick Guidotti

About the Albinism Fellowship
Founded in 1979, the Albinism Fellowship (www.albinism.org.uk) is a positive and sociable volunteer-run organisation that aims to provide information, advice and support for people with albinism and their families. The fellowship, which is a registered charity, also provides information about the condition to professionals working with people with albinism and other appropriate interested parties.
The vision for the Albinism Fellowship is that all people with albinism should have the opportunity to reach their full potential.
 
About Positive Exposure
Positive Exposure, (website: https://positiveexposure.org/) is a not-for-profit organisation that uses photography, film and narrative to transform public perceptions of people living with genetic, physical, intellectual and behavioural differences, including albinism.
Based in New York City, in the United States, its educational and advocacy programmes reach around the globe to promote a more inclusive, compassionate world where differences are celebrated.
 
About albinism
Albinism is a comparatively rare genetically inherited group of conditions which lead to a reduction or complete lack of pigment (colour) in people’s skin, eyes and hair. This can result in pale skin which burns easily in the sun. People with albinism can also have virtually white hair, severe short sight and photophobia (a severe sensitivity to light). Around 3,000 people live with albinism in the UK and the Republic of Ireland. More information is available at: http://www.albinism.org.uk/about_albinism.php
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