Petition Leads Iran to Create National Document on Rare Diseases

RADOIR

Rare Diseases Foundation of Iran (RADOIR) is an organization dedicated to supporting those living with rare diseases in Iran. It is a nonprofit which was founded in 2008 with the assistance of Doctor Ali Davoudian.

Worldwide, there are approximately 7,000 rare diseases affecting 8% of the population. In Iran, only 58 rare conditions have been identified in the population thus far. These diagnoses affect over 1.2 million Iranian citizens.

RADOIR aims to support these individuals by conducting research, aiding in the development of medical centers/services specific for rare diseases, and spreading awareness for the cause. Some of their specific goals include:

  • Collaborate with NGOs and public/private organizations
  • Conduct research
  • Raise awareness
  • Empower patients
  • Create specialized journals for rare diseases
  • Hold conferences, workshops and seminars for patients
  • Provide social, judicial, and economic assistance for patients
  • Establish centers for supportive care of patients

One of the organizations most recent projects has been helping to draft a national document for rare diseases in Iran.

A New Document

On Rare Disease Day 2019, rare disease patients signed and launched a petition for a national document on rare diseases. They believed that such a document would help accelerate both research for new treatments and new preventative measures for these diagnoses. Ultimately, it could bring patients improved physical and mental care.

Thankfully, Iran’s Health Minister agreed to the document and he authorized Tehran University of Medical Sciences to begin drafting it. Since the beginning of Iran’s calendar year (March 21) Tehran has been collaborating with RADOIR to create a final version.

This development is extremely excited for Iranians living with rare diseases as it will hopefully bring greater awareness and greater support of research to the field.

You can read more about this document and the process of its development here.


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