Global Commission to End the Diagnostic Odyssey of Children with Rare Diseases
On Wednesday, February 20, 2019, there will be the official launch of the Global Commission to End the Diagnostic Odyssey of Children with a Rare Disease’s (“The Global Commission”) digital roadmap for shortening the time to diagnosis for children with rare diseases worldwide. The Global Commission is a multidisciplinary group of experts formed by Shire, Microsoft and EURORDIS-Rare Diseases Europe with the creativity, technological expertise and commitment required to accelerate time to diagnosis and make a major difference in the lives of millions of children and their families. The launch meeting will be announced at Microsoft Offices Headquarters, Times Square, New York City.
The Global Commission launch event, will take place the day before the Second High-Level Policy Event of the NGO Committee for Rare Diseases being held on February 21 at United Nations Headquarters in New York City. This event has a limited number of spaces available. If you are interested in attending, please contact the Secretariat of the NGO Committee for Rare Diseases firstname.lastname@example.org
More info here (https://www.globalrarediseasecommission.com/).
Rare Diseases International 5th Annual Meeting
The RDI meeting (register here) and the UN event (register here) will take place in New York City on February 20 and 21, 2019.
Undiagnosed Diseases Network International (UDNI) Conference on Rare Disease and Undiagnosed Diseases
Undiagnosed Diseases satellite meeting at annual Meeting of Inflammatory Pathologies and Rare Diseases. Turin January 23rd – 26th, 2019.
A one-day event dedicated to Rare Undiagnosed Diseases will be held in Turin on 23rd – 26th January, 2019. It will be an important occasion to discuss results from the project “Undiagnosed Rare Diseases: a joint Italy - USA project”: the project, funded by the Ministry of Foreign Affair and International Cooperation, is coordinated by Dr Domenica Taruscio (Istituto Superiore di Sanità) within the bilateral agreement between Italy (Istituto Superiore di Sanità) and USA (Prof William A. Gahl, National Human Genome Research Institute, Bethesda, Maryland).
More info here (http://www.seleneweb.com/doc/728a.pdf)
The Flight of Pegasus: Call for entries. Deadline: 6th January 2019
The National Centre for Rare Diseases - Istituto Superiore di Sanità, is pleased to announce the launch of the 11th edition of the artistic and music competition The Flight of Pegasus dedicated to rare diseases.
This competition aims to raise awareness of rare diseases, providing expressive spaces to people who, in various ways, face rare conditions, often undiagnosed, or wish to learn more about these disorders. The competition is open to artists, amateurs, health-care professionals, patients, family members or anyone else wishes to participate. There is not entry fee. Sections include: drawing, painting, sculpture, photography, digital art, music composition and interpretation
Entries will be assessed for the art award by a judging panel of qualified experts. Winners and their artworks will feature in an international peer-reviewd scientific journal.
2nd International Congress on Advanced Treatments in Rare Diseases (RARE2019)
The conference will take place on 4-5 March 2019 in Vienna, Austria.
RARE2019 will follow on from the success of its predecessor, addressing the challenges of Rare Diseases Treatments as well as new therapies on the horizon. More information you can find here.
Rare Disease Day 2019
Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives. On 28 February 2019 will be the twelfth international Rare Disease Day coordinated by EURORDIS. On and around this day hundreds of patient organisations from countries and regions all over the world will hold awareness-raising activities. More information you can find here.
JustGiving campaign for Rare Disease Day 2019
JustGiving is the world's most trusted platform for online giving. Rare Disease UK is the national campaign for people with rare diseases and all who support them, providing a united voice for the rare disease community by capturing the experiences of patients and families. Throughout February 2019 they will be hosting numerous events and activities to mark Rare Disease Day. Rare Disease UK is a campaign run by Genetic Alliance UK, the national charity of over 200 patient organisations, supporting all those affected by genetic conditions. More information about the campaign you can find here.
Rare Disease Week on Capitol Hill 2019
Rare Disease Legislative Advocates (RDLA) will bring together over 500 patient advocates in Washington, DC for a week of events dedicated to empowering patients, families, friends, and healthcare professionals to become legislative advocates. During the week of February 24-28, 2019, advocates will have an opportunity to meet with Members of Congress and learn best practices for successful advocacy.
Rare Disease Week on Capitol Hill 2019 kicks off on February 24th with a documentary screening and cocktail reception.
Registration for Rare Disease Week on Capitol Hill begins on January 3rd, 2019. More information you can find here.
New Research: how care should be coordinated for rare diseases
Although good examples of coordinated care exist, there are still serious failings in how care is coordinated for many with rare diseases (including undiagnosed genetic conditions). Genetic Alliance UK are part of a wider team of academics and experts in rare diseases addressing this gap through a new research study, COordiNated Care Of Rare Diseases (CONCORD). The study, beginning in June 2018, will run for two and a half years and is funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research Programme. The study is led by Professor Steve Morris, a health economist at UCL. More information about the study you can find here.
A rare look 2019
"Uno Sguardo Raro" - the Rare Disease International Film Festival, the International Film Festival on the theme of rare diseases, was born to tell what it means to live in a different way and stimulate, through cinematographic and audiovisual narration, a reflection on how it is possible to tell this particular theme with innovative communication registers and high emotional impact. One of the most important objectives of the next edition of the Festival is to involve more and more young people, university students and pupils of art and communication schools, to raise awareness of the specific theme of rare diseases that can stimulate in the future, with its own I work a greater understanding together with a greater social inclusion for this community. The appointment to follow the Festival is in Rome, at the Casa del Cinema on 9 and 10 February 2019 , with free admission. More information about the festival you can find here.
Rare Disease Day at NIH 2019
Sponsored by NCATS and the CC, this year’s event will feature interactive panel discussions on collective research models for rare diseases, patient registries, rare cancer research initiatives, and "no disease left behind, no patient left behind." New this year will be a presentation of the first ever Zebbie award for the NCATS Rare Diseases are Not Rare! Challenge. Other highlights include posters and exhibits by rare disease groups and researchers as well as artwork, videos and CC tours. Admission is free and open to the public. In association with Global Genes®, participants are encouraged to wear their favorite pair of jeans. More information you can find here.