We are proud to announce the “11th International VHL Symposium”, that will be held in Madrid from Thursday 23th to Saturday 25th, October 2014. Biannually it brings together leading basic and translational researchers and clinicians involved in the treatment and follow-up of patients with von Hippel-Lindau disease. These meetings help...
Events
A convention of the LUPUS EUROPE member countries takes place once a year in a different country. This year the Convention will take place in Helsinki, Finland
The French Angelman Syndrome Association (AFSA), organize the Third Angelman Syndrome International Meeting, which will take place at the Institute for Myology, inside La Pitié Salpétrière hospital in Paris (France) on 17 October 2014 and the AFSA National Meeting, in FIAP Jean Monnet in Paris, on 18 and 19 October...
Dysmorphism and radiological signs can be good diagnostic handles for a number of inborn errors of metabolism (IEM). The course will focus on these clinical aspects of IEMs. The venue is Manchester, U.K., home of the Willink Biochemical Genetics Unit and one of the leading centres for clinical dysmorphology. We...
The meeting follows a tradition initiated in 2012, when the founding conference with the same focus – established by Days of Molecular Medicine – was held at Palais Liechtenstein in Vienna. For the second time, the meeting will bring together high-profile scientists from around the world and will focus on...
Aniridia Europe and Aniridia Italiana are pleased to announce that the 2nd European conference on Aniridia will take place in Venice from 19th to 20th September 2014, at Fondazione Banca degli Occhi del Veneto Onlus, Venice, Italy, a prestigious venue with dedicated meeting rooms and a 400 place auditorium, just...
The SIOPE – ENCCA Conference, 18 – 19 September 2014 in Brussels, Belgium, is the first event of its kind that sets out to address the most urgent issues in paediatric cancer faced by the pan-European research, health, and patient interest groups – integrating new therapies into standard care, improving quality of...
The European Lung Foundation (ELF) brings together patients, the public and respiratory professionals to positively influence lung health. ELF works all year round with a network of patient organisations in the respiratory field from across Europe. Each year they invite national and European patient organisations, representing a wide range...
The 14th International Conference on Na,K-ATPase and related transport ATPases will cover structure, mechanism, cell biology, health and disease of all P-type ATPases. Leading scientist and representatives of major pharmaceutical companies from all over the world will present and discuss their latest news on P-type ATPases. The conference will...
We would like to invite you to attend the Myotubular Trust’s third European family conference in London on Saturday 12th July 2014. Check in will be from 9.00am for a 9.30am start. The Conference is free-of-charge and provides a unique opportunity for you to meet other affected families and...
The European Working Group on Gaucher disease (EWGGD) was launched as an affiliate of the European Study Group on Lysosomal Diseases (ESGLD). At the ESGLD meeting in Delphi in 1993, the founding of the Group was proposed by Prof. Dr. J.M. Tager, professor of Biochemistry and Prof. dr. R. Goudsmit,...
To commemorate PC Awareness Day this year, we invite you to join us on a leisurely bike ride through Wilder Ranch (same route as was used for the Duathlon) followed by a potluck lunch. We’re calling the festivities PC Picnic Day. This activity will give us the opportunity to bring...
Our 3rd Annual “RARE Patient Advocacy Summit” will be held on September 11-12, 2014 at the Hyatt Regency in Huntington Beach, California. Registration opens June 2, 2014. Agenda to be posted soon! Empowering Patient Advocates to Become Successful Activists A rare diagnosis changes everything. It crashes plans and dreams, knocks you off your...
They paved the way for policy change and handled patients with care and respect. Some helped to show the beauty of genetic variety. Others brought the rare community into the mainstream spotlight. Global Genes has been proud to award these hard working individuals with their annual Champions of Hope awards—giving...
NORD’s Rare Diseases and Orphan Products Breakthrough Summit is the largest and most meaningful multistakeholder event of its kind – Powered by over 30 years of passion and serving the patients and families affected by rare diseases with new channels of answers, advocacy, advancements in research and access to life-transforming...
Date: June 18, 2014 Time: 10:00 am PT / 1:00 pm ET Register here! Health insurance coverage for patients with rare diseases has undergone significant changes in recent years. At the forefront are changes in how the insurance industry designs and delivers benefits and new coverage options created by the...
2014 aHUS Meetups Finding out that you or a loved one has atypical hemolytic uremic syndrome (aHUS) can be difficult. But you are not alone. In fact, sharing experiences with other patients and families affected by aHUS can help decrease isolation and provide valuable information and support....
There is no registration fee to attend the conference; however, you must be registered no later than July 1, 2014 for BDSRA to provide accurate attendee counts to the hotel to ensure everyone’s comfort for an enjoyable experience. Please Note: Hotel room reservations must be made directly with the Columbus...
Mark your calendars for the first annual Million Dollar Bike Ride to raise money for rare disease research world-wide, organized by the Penn Center for Orphan Disease Research and Therapy and Rare Disease Cycling. Money raised by each rare disease cycling team will be matched dollar-for-dollar towards an associated pilot...