A disease or disorder is defined as rare in Europe when it affects less than 1 in 2000 citizens and in the USA when it affects fewer than 200,000 people.
Rare diseases may affect more than 60 million people worldwide.
Live from Tbilisi. I am at the 2nd South Caucasia Conference on Rare Diseases and Orphan Drugs. This conference organised by our our Georgian member (Georgian Foundation for Genetic and Rare Diseases – GeRaD) together with the Alliance for Rare Diseases of the SOCO Foundation under the aupisces of EURORDIS thanks to the support of [...]
After the impact on Europe of the US financial crisis two years ago, the EU is now shaken by a new crisis, a crisis of the Euro spurred by the public deficit of Member states. The future of EU is at stake, at least in its vision as a political space for peace, economic growth [...]
Date: 11–14 May 2011
Venue: Antalya, Turkey
TIF’s largest and longest-established international event for medical professionals, scientists, patients and parents is the biennial International Conferences on Thalassaemia & Haemoglobinopathies, organised jointly with the TIF International Thalassaemia Patients/Parents’ Conference, which attracts hundreds of delegates from all corners of the world. TIF has had impressive results over the [...]
No doubt, the EU Cross-Border Health Care Directive is a new important legislation to improve quality and access to health services for patients!
This policy lays down the basis of the future organisation of healthcare services in the European Union and grant new rights to patients to take advantage of being European citizens. When we will [...]
The Cyprus Alliance for Rare Disorders (C.A.R.D.) is a non-governmental, non-profit organisation t founded in Nicosia, Cyprus in June 2010. Its founding members include the Cyprus Muscular Dystrophy Association, Cyprus Adult Congenital Heart Defects Association- Cyprus, Cyprus Association for the Protection of Spastic and Handicapped Children, Parents Association of Spastic and Handicapped Children, Cyprus Primary [...]
As EURORDIS’ EuroPlan advisor, I have attended the conference in Bulgaria, organized the conference in Romania and attended the organizing committee meeting in Budapest for the Hungarian Europlan conference that was held on 15-16th October 2010.
Both organized conferences were animated by interesting discussions regarding the present situation of patients with rare diseases.
Bulgaria has already a [...]
The summer of 2010 saw remarkable activity related to the development of treatments for rare diseases. The U.S. Food and Drug Administration hosted a two-day public hearing for patient advocates, industry, academic researchers and others to voice their views on current procedures and possible ways to improve them.
The Senate HELP (Health, Education, Labor and [...]
The National Organization for Rare Disorders (NORD) considers today’s announcement by the Social Security Administration (SSA) of expansion of the “Compassionate Allowances” program to be extremely important to patients and families affected by rare diseases.
Since Michael Astrue became Social Security Administrator, he has provided strong leadership in addressing issues that were very difficult and discouraging for [...]
In the U.S., the health care reform process has been extremely confusing to many people. The language in the various bills is complex. And many of the proposed changes won’t take effect for several years, even if enacted now.
NORD’s position on health care reform, from the very beginning, has been that any plan needs [...]
This decision is part of a significant reshuffle of responsibilities assigned to each Designated Commissionner in the Barosso II European College of Commissionners. For this decision to be implemented the new Commissionners need first to be approved by the European Parliament in January / February. This transfer is an important change. All [...]
