ICORD supports the UN Resolution on “Addressing the Challenges of Persons Living with a Rare Disease and their Families” and devotes efforts to improve the welfare of patients with rare diseases and their families world-wide through better knowledge, research, care, information, education and awareness.
Please click here to see the draft resolution.
The 3rd Training Course “Quality assurance, variant interpretation and data management in the NGS diagnostics era”, which will be held on 27th – 29th October 2021, is organized by the National Centre for Rare Diseases – Istituto Superiore di Sanita, in the framework of EJP-RD and with the endorsement of ICORD (and others).
The programme of the course can be found here
More information on the course and the registration form on the EJP – RD website
“International Summer School on Rare Disease Registries and FAIRification of Data” (Online Edition, September 27 – October 1, 2021) organized in the frameework of the EJP-RD by Istituto Superiore di Sanità (Rome, Italy) and endorsed by ICORD.
Donwload Programme of the Course
The Board of ICORD and the General Assembly have approved the first Honorary Members of the society.
During the General Assembly held on 28th April 2021 the following to Honorary Members were confirmed:
- John Forman, New Zealand
- Dr. Jan-Inge Henter, Sweden
As written in the By-Laws, individuals who have excelled in the field of rare diseases and who are retired from their usual activity, as well as distinguished individuals who, in the view of the Board, could be valuable members for the activities of the Association.
The Board of ICORD congratulates Mr. Forman and Dr. Henter.
ICORD joins with more than 300 million people, their families, and caregivers worldwide in the celebration of Rare Disease Day. The members of ICORD share the patient-centered approaches adopted by the rare diseases community to provide useful information about rare diseases, timely and correct diagnosis of more than 7000 rare diseases, and equal global access to innovative drugs, biological products, and medical devices for patients in all countries. These products and services, when made available to all regardless of socio-economic status, will lead to an improvement in care and the quality of life with full personal integration into all aspects of society to maximize the human potential of individuals throughout their lifespan.
We are forever grateful for the dedicated efforts, personnel, and financial resources provided by patients, families, patient advocacy groups, health care providers, academic research investigators, research and regulatory agency scientists, the biopharmaceutical, medical devices, and diagnostics industry, national government policy officials, and elected representatives who have contributed to approval of more than 925 uses of orphan products worldwide. The path to an approved orphan product is extremely difficult. The continued work of the rare diseases community to meet the needs of patients with rare diseases is highlighted particularly on Rare Disease Day on February 28 in many countries. ICORD continues to foster and inspire global collaboration among all rare disease stakeholders.