miércoles, 23 de enero de 2019

7 ways to find information on your rare disease | www.eurordis.org

7 ways to find information on your rare disease | www.eurordis.org

Eurordis, Rare Diseases Europe


7 ways to find information on your rare disease

  1. Search for a EURORDIS member patient organisation that represents your disease

EURORDIS has 826 member organisations from 70 countries.

Start typing a rare disease and select a disease from the dropdown list that then displays

  1. Search Orphanet

Orphanet is a directory of rare diseases, orphan medicines, patient organisations, professionals, expert centres, diagnostic tests, research projects, clinical trials, registries and biobanks.

  1. Find the rare disease national alliance in your country

National alliances federate patient organisations from a wide range of diseases within a particular country.
Choose your country

  1. Find a helpline in your country

Rare disease helplines offer advice to a patient or family member on how to find the information they need to manage living with a rare disease.

  1. Find information related to your disease on eurordis.org

  1. Find your rare disease community on RareConnect

RareConnect is a safe, easy to use platform where rare disease patients, families and patient organisations can develop online communities and conversations across continents and languages. Find your rare disease online community.

  1. Read the stories of other people living with a rare disease on the Rare Disease Day website

day website
Search by disease and countryamong the hundreds of stories shared by people living with a rare disease and family members from around the world.

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