Annual Awareness Day on November 1st, to raise awareness for patients diagnosed with Acromegaly. The goal is to help people with this rare endocrine disease get the timely diagnosis and effective treatment they need and deserve.
ISCA is a unique scientific conference organized by the Global Albinism Alliance and shaped to be a global forum to improve the health of those with albinism. (Online Conference)
Taller previo a la conferencia 17 de noviembre de 2022 11:00-12:15 GMT-3 / 15:00-16:15 CET Virtual event → Haga clic aquí para participar : bit.ly/3O8nnVP (no es necesario registrarse antes) ¡Complete la encuesta antes del taller! → https://forms.gle/z9RL5vSeUftpdeAL7
For the first time, the World Duchenne Organization will team up with RaDiOrg Rare Diseases in Belgium and SMA Europe in Germany to form a wider network of approximately 160 Patient Organizations all interested in how the FAIR principles could make a difference in optimizing the use of patients’ data.
FREE to attend, RAREfest22 is a public-facing, 2-day rare disease inspired festival featuring interactive talks, demos and exhibits, film and art showcasing ground-breaking science, visionary technology and pioneering organisations, improving lives and bringing hope to those affected by rare conditions. FOR THE EXPERTS. FOR THE CURIOUS. FOR ALL AGES. FOR EVERYONE. FOR FREE!
The Asia Pacific Alliance of Rare Disease Organizations (APARDO) brings together patient advocate leaders from across the Asia Pacific region representing rare diseases and rare cancers, with the goals of sharing experiences and learning, increasing the patient voice, and working together on common goals, facilitating research, sharing resources and best practices, and collaborating on joint […]
UNESCO-IBE is inviting you to join the webinar on "Improving inclusion of children living with a rare disease through curriculum transformation", co-organised with the Agrenska Foundation and Rare Diseases International and taking place on 28 November 2022 2:00-4:00 PM - Geneva time - (UTC+1). Register here : https://unesco-org.zoom.us/webinar/register/WN_fLY9Q7WITmGJnL_F9OT09A More info here : http://www.ibe.unesco.org/en/event/webinar-improving-inclusion-children-living-rare-disease-through-curriculum-transformation
On November 29 and 30, the Global Heart Hub is bringing together patient representatives from all over the world for the second Unite Annual Summit. (Free Virtual Event) Register : https://globalhearthub.org/unite-annual-summit/
The International Rare Diseases Research Consortium (IRDiRC) and the European Joint Programme on Rare Diseases (EJP RD) are jointly organizing a two-day conference on clinical research networks (CRNs) for rare diseases, which will take place on December 1 and 2. The objective of this conference is to gather experts from different continents to increase mutual knowledge on CRNs structure, activities and identify pathways […]
Duchenne Patient Academy is a collaboration between the World Duchenne Organization and Duchenne Data Foundation. It aims to inspire and equip patient advocates to become change makers and build a better future for people living with dystrophinopathies. So far, it has trained over 500 DMD/BMD patient advocates from 52 countries. ONLINE Applications for Duchenne Patient Academy open mid-September.
