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RARE Anaemias International Network (RAIN)

RAIN is a global, community-based organisation focused on all rare and ultra-rare anaemias. It is guided by a Steering Committee of patients and patient advocates, a Scientific Advisory Board of world-leading experts in rare anaemias, and a Member Network, all of whom provide support, information, and resources on different rare anaemias.

Recognising the similarities of thalassaemia with other rare anaemias, as well as the absence of disease-specific, globally oriented organisations for patients with these conditions, TIF proceeded to the creation of RAIN with the aim to share its expertise, infrastructure, and resources, and provide further support to the broader community of people with rare anaemias worldwide.

What We Do

RAIN exists to establish a global voice for patients with rare anaemias and their caregivers, providing the support, information, and resources they need.

Our Vision

Our vision is:

To empower and strengthen patient advocacy groups supporting rare anaemias by establishing a global network for the dissemination and exchange of knowledge and best practices
To establish a global voice in rare anaemias through community collaborations

Our Mission

RAIN aspires to improve the health and quality of life of people with rare anaemias by:

Implementing and/or establishing national policies specific to rare anaemias
Ensuring equal access to diagnosis and treatment
Initiating and supporting research by bringing the patient perspective to the drug development process
Rendering novel therapies accessible to patients

Consensus Statement

In collaboration with its members, RAIN has developed a Consensus Statement to share its purpose and what the network aims to achieve.

Read the Statement