According to Eurodis News Agency:

Durhane Wong-Rig, Chair of the RDI Council, and Yann Le Cam, Chief Executive Officer of EURORDIS, sign the MoU

The vision of the Sustainable Development Goals is a world in which no one is left behind, including people who suffer from rare diseases. Just because a disease affects a small number of people does not make it irrelevant or less important than diseases that affect millions.

Rare Diseases Foundation of Iran attended the European Conference on Rare Diseases and Orphan Drugs and accepted to sign a document on Diagnosis and pharmaceutical collaboration with EURORDIS.

Open Call for NGOs to apply for Consultative Status with the United Nations (Deadline: 1 June 2018)

NGOs interested in applying for ECOSOC consultative status should submit their application and required documents on or before the deadline of 1 June 2018. The following link provides background information, the benefits of consultative status and instructions for how to apply: https://bit.ly/2ozYpVw  

The 2018 RDI General Assembly (open to RDI members only) and Annual Meeting (open to everyone interested in learning more about international rare disease initiatives) will also take place on 10 May in conjunction with ECRD.

Register to attend

On the occasion of Rare Disease Day

Rare Diseases Foundation of Iran held Genodermatoses symposium

The symposium of Rare Condition of Skin Disease (Genodermatoses) held by Rare Diseases Foundation of Iran in collaboration with Dermatology and Stem Cell Research Center and Tehran University of Medical Sciences on February, 26, 2018 in Tehran.

Rare Diseases Foundation of Iran held a Rare Metabolic and Genetic Diseases symposium for one day on December 20, 2018, in collaboration with Tehran University of Medical Sciences in Tehran.

 

Partnership of Rare Disease Patients is the focus of Rare Disease Day

Managing Director of Rare Diseases Foundation of Iran: This year the conference with slogan of “Partnership of Rare Disease Patients is the key factor for productive research on Rare Diseases” is a new chapter in collaborating with Rare Disease Patients to use their experiences in the research field.

A General Strategic Review on Rare Diseases & Orphan Drugs

Joan Chambers

Senior Strategic Advisor      

Rare diseases are generally defined as diseases that affect fewer than 200,000 people in the United States. Because rare diseases touch so few people, pharmaceutical companies traditionally did not pursue drug treatment for them. In addition, only a few types of rare diseases are tracked in the United States. That makes it more difficult to know exactly how many rare diseases exist and how many people have them.¹ Treating these diseases has its own unique challenges, said Scott Schliebner, vice president of scientific affairs – rare diseases for PRA Health Sciences. Schliebner, considered an industry expert on this topic, is also a well-recognized speaker about rare diseases.