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RE(ACT) Community
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Share information and boost research about rare and orphan diseases.
Share information and boost research about rare and orphan diseases.

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RE(ACT) Community's posts

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The second recommendation of the #RAREvolutionPetition focuses on a multi-disciplinary and coordinated approach to conduct rare diseases research. Read more and sign the petition >> http://bit.ly/REACTCongressPetition 
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We are glad to share with you the monthly #RARETalk with Kelly du Plessis, the founder and CEO of Rare Diseases South Africa (RDSA) and the Director of the RAREX Conference. Find out more about her amazing experience as #RAREvolutionary mother and advocate for #RareDiseases >> http://bit.ly/RARETalkKelly_GP

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The #RAREvolutionPetition calls upon public authorities to improve efforts for research and provides nine recommendations for the establishment of new policies. Sign the petition >> http://bit.ly/REACTCongressPetition
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Gisela is a Spanish researcher who has just started a crowdfunding campaign on the RE(ACT) Community. She needs your support for the research project on Myotonic Dystrophy type I (#DM1). Find out the project's details watching the video and donate to make it real. We are the #RAREvolutionary people. Stand up for scientific research > http://bit.ly/project_DM1_GP

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Not yet a member of the #REACTCommunity? Create your account and find out how you can contribute in supporting scientific research on #RareDiseases. Subscribe to our newsletter, you will receive a monthly bulletin from the #RAREvolution with updates on the activities of the #ReactCommunity. Sign up here >> http://bit.ly/REACTCommunity_signup_FB
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The RE(ACT) Community's vision is to create an international #network to support scientific research on #rarediseases through the direct involvement of different stakeholders. The article below is "a prototypical example of how academia, industry and private foundations can collaborate to advance a #drug". The new #treatment for Spinal Muscular Atrophy, called nusinersen, will soon be reviewed by the U.S. Food and Drug Administration thanks to the support of a charitable couple, who facilitated the meeting between the startup that developed the drug and a biotech giant industry >> https://www.bloomberg.com/features/2016-sma-drug-trial

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On July 6th, Dr. Olivier Menzel from BLACKSWAN Foundation, had the chance to present the #REACTCommunity during the 9th edition of The Social Business Forum, the leading international event on collaborative and digital transformation focused on the new platform business models. Digital platforms, like the #REACTCommunity, can have a significant impact on the way #RareDiseases are diagnosed, studied, and treated, helping people with rare diseases connect to others worldwide. Watch the slide here >> http://bit.ly/SBF16_REACTCommunity

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Every year for three days in July, people from all over the U.S. and in Europe diagnosed with Friedreich's Ataxia travel to the "FA Woodstock", a grassroots event in rural Indiana. It is a great occasion for patients to feel not alone: they camp, swim, make crafts together like a big family. The event is also a boon to researchers, who have been using the access to so many patients to help speed along a treatment or even a cure. The FA Woodstock's success has attracted the attention of the Friedreich’s Ataxia Research Alliance (FARA), an advocacy group outside Philadelphia that raises money for research >> http://bit.ly/FriedreichsAtaxia

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Dravet syndrome is a rare form of epilepsy that begins in infancy. It is a debilitating, life-long condition that can severely impede the quality of life of the patient. The Dravet Syndrome European Federation is running a project call DISCUSS, a survey to find out the daily lives of mothers, fathers and caregivers who take care of children with Dravet syndrome. DISCUSS survey is available until August 4th 2016 >> http://discussdravet.weebly.com.
Follow the disease >> http://bit.ly/REACTCommunity_DS_GP

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During the last #RARETalk, our guest Niccolò has shared with us the three main challenges that he has to face living with the Glycogen Storage Disease type 1a: Creating awareness on Glycogen Storage Disease, Encouraging who was born with a rare disease not to feel ashamed, Finding a cure. How can you help him? Join the #REACTCommunity and follow the disease. With 15 followers the disease will be unlocked, allowing researchers to submit a project >> http://bit.ly/REACTCommunity_GSD1a_GP
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