DEVENEZ RARES ! Rendre le don sympathique : wwanted.ch |
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Mercredi, 22 Février 2012 13:31 |
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LA FONDATION BLACKSWAN met en perspective les dons.
Les maladies rares peuvent toucher tout le monde. Trois maladies rares sur quatre sont des maladies pédiatriques générant des incapacités sévères. Mais certaines maladies orphelines attendent 30, 40 ou 50 ans avant de se déclarer. Elles peuvent empêcher de bouger (myopathies), de voir (rétinites), de comprendre (X fragile) de respirer (mucoviscidose), de résister aux infections (déficits immunitaires) etc.
Rendre le don sympathique
Au travers de la plate-forme Internet www.wwanted.ch , La fondation BLACKSWAN offre la possibilité à chacun de devenir ambassadeur en faisant l’acquisition du T-shirt « j’ai un don – j’ai fait un don ». Ainsi chaque personne peut afficher avec originalité son attachement à la cause.
Pourquoi wwanted.ch ?
wwanted.ch Le doublement de consonne "W" n'est pas une erreur. Il représente l'infime différence que le génome peut comporter en donnant naissance à une maladie rare.
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The Brain Diseases and Molecular Machines 2012 Conference |
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Mardi, 29 Novembre 2011 14:59 |
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BLACKSWAN Foundation supports the The Brain Diseases and Molecular Machines 2012 Conference: Longevity, Development and Neurodegenerative disease
Tokyo, May 8-11, 2012
The aim of the BD&MM conferences is to foster innovation and networking in the field of translational research for human diseases. In 2012, the conference will bring together a panel of international experts to discuss frontier research in the field of Longevity, Development and Neurodegenerative disease. Recent progress in the study of development, longevity and disease indeed suggests that alterations of developmental, regenerative and longevity-promoting systems play important roles in neurodegeneration. The BD&MM 2012 conference will cover nine selected hot topics to show how research in developmental biology and aging/longevity promises to open new avenues for the treatment of neurodegenerative disorders. The conference will focus on major diseases as well as rare neurodegenerative disorders. More information about this special and exciting event foreseen to foster scientific solidarity and partnership is available at http://www.broca.inserm.fr/BDMM/.
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Gene Therapy Works For Corey |
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Jeudi, 13 Octobre 2011 08:43 |
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LEBER’S CONGENITAL AMAUROSIS
Nancy Haas received a wonderful Mother’s Day Present, knowing her son, Corey could play Little League baseball without help – thanks to gene therapy!
Under the direction of a team at The Children’s Hospital of Philadelphia, led by Jean Bennett, MD, PhD, F.M. Kirby Professor of Ophthalmology and Katherine A. High, William H. Bennett Professor of Pediatrics, both at University of Pennsylvania School of Medicine, eight-year-old Corey Haas of Hadley, N.Y., received gene therapy for a rare disease called Leber’s congenital amaurosis, which was causing him to go blind.
His family knew the treatment worked when, soon thereafter, Corey asked his parents when two of his friends changed their hair color. He could finally tell they were blondes, not brunettes.
Ethan Haas, Corey’s father, said the treatment was worth it. “He’ll be sitting in the back of the car and say, “I can see the trees go by, and I couldn’t see them before,” Haas said. (Boston Globe and Reuters)
Watch the video |
Climbing for BLACKSWAN Foundation: Les Cinq Quatre Milles |
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Vendredi, 01 Juillet 2011 00:00 |
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The Imperial Crown
The Imperial Crown is the grand name given to the range of 4000m peaks that encircle the Val d’Anniviers in the Swiss Valais. The Eastern upper fork of the Val d'Anniviers is the most spectacular in the Apls because of its 'Imperial Crown'. Behind Zinal, that is dominated by Le Besso (3668m), lies the Imperial crown that is made up of the Bishorn (4153m), Weisshorn (4506m), Schalihorn (3975m), Pointe Sud de Moming (3963m), Blanc de Moming (3657m) and Zinalrothorn (4221m). This line of peaks swings round to the southern end that includes the Trifthorn (3728m), Ober Gabelhorn (4063m), Mont Durand (3713m), Pointe de Zinal (3789m), Dent Blanche (4357m), Grand Cornier (3963m), Bouqutins ridge and the Pigne de la Le (3396m).
My intention is to climb the Cinq Quatre Mille in 2011 to raise money for the BLACKSWAN Foundation.
Why the BLACKSWAN Foundation? Someone important to me and my friends was affected by a rare disease.
Lee Kirk
For more information about this outstanding project click here.
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EURORDIS Membership Meeting 2011 |
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Lundi, 16 Mai 2011 00:00 |
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The EURORDIS Membership Meeting 2011 will be held in Amsterdam, the Netherlands.
The purpose and objectives of the Membership Meeting are to provide networking opportunities to patients and patient organizations, capacity building in the form of interactive workshops and empowerment to patients and patient organizations as a direct result of the capacity-building sessions.
Download the EURORDIS activity report 2010. |
Mediaplanet on Rare Diseases |
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Lundi, 28 Février 2011 00:00 |
The journal Tages Anzeiger with Mediaplanet published a special edition on rare diseases. The BLACKSWAN Foundation is mentioned, and the president, Dr. Olivier Menzel, is interviewed as a orphan diseases’ researcher. Download the pdf . |
RARE DISEASE DAY Switzerland |
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Dimanche, 20 Février 2011 00:00 |
ProRaris organized the first International Rare Disease Day in Switzerland. The event is a huge success. More than 400 people between patients, families, politicians, physicians, researchers and supporters were present in Bern for this important day. For more information about the day please visit the link . |
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Samedi, 01 Janvier 2011 00:00 |
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The BLACKSWAN Foundation create the RE(ACT) Congress: international congress on research of rare and orphan diseases.
The first edition will take place at the Gehry Building on the Novartis campus in Basel, Switzerland. For its first edition a collaboration with the Gebert Rüf foundation was established because the are currently running a 10 million Swiss Francs program of five years supporting the research on rare diseases (Rare Diseases – New Approaches).
The congress in supported by Eurordis (European alliance of rare disease patients) and by ProRaris (Swiss alliance of rare disease patients)
For more information about the RE(ACT) congress please visits the webpage: www.react-congress.org
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Lundi, 06 Décembre 2010 00:00 |
The BLACKSWAN Foundation is present at the Geneva TEDx with the exiting project of our brochure “Visualization of Rarity”, presented by the designer Demian Conrad. Have a look to his excellent presentation at this link . |
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Jeudi, 18 Novembre 2010 00:00 |
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The BLACKSWAN Foundation was invited with the actress and writer Anna Kanakis at the Science for Peace Conference in Milano by Professor Umberto Veronesi. |
Professor Claude Le Coultre |
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Vendredi, 01 Octobre 2010 00:00 |
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Professor Claude Le Coultre accepted to be a friend of the BLACKSWAN Foundation. Professor Le Coultre is originated from Geneva and is a worldwide well known pediatric surgeon, expert in liver transplantation. She was in charge of the Pediatric Surgery unit of the Geneva children hospital. She is member of the International Red Cross (CICR). She is now retired but very active for the Children Action Foundation and different missions in Africa and Asia for the CICR. Thank you Claude to support our cause in the field of rare and orphan diseases.
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Donation of 25,000 Swiss Franc |
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Jeudi, 16 Septembre 2010 14:01 |
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Beginning of september the BLACKSWAN foundation received 25,000 Swiss Franc that were necessary to officially start our activity. Thank you Carlo to believe and support our cause. You have done so many good and positive things in your life, this is one of those...we are proud to have been supported by you! |
Registre du commerce Suisse |
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Mardi, 27 Avril 2010 03:46 |
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La Fondation BLACKSWAN - pour la Recherche sur les Maladies Orphelines est officiellement inscrite au registre du commerce Suisse (21.04.2010). |
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Dimanche, 28 Mars 2010 03:46 |
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La Fondation BALCKSWAN est heureuse de vous informer que la demande de statut de membre associé d'Eurordis a été officiellement approuvé à la réunion du conseil d'administration tenue le 26 Mars 2010. EURORDIS est une fédération d’associations de malades et d’individus actifs dans le domaine des maladies rares. Elle a pour ambition d’améliorer la qualité de vie de toutes les personnes vivant avec une maladie rare en Europe. |
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