RESOURCES
Knowledge is power within the rare community, between patients, families and medical professionals; we hold a wealth of information that is most useful when shared.
Below is a growing list of links to helpful resources for rare disease umbrella organisations* that serve our community at every level. If you think there is one that we have missed, don't hesitate to contact us with details so that we can add it to the list.
*a term used for groups and organisations that encompass all rare diseases, as opposed to specific patient groups
01.
I AM NUMBER 17
A free educational resource primarily for medical professionals, but open to all.
02.
EURORDIS
A disease agnostic advocacy organisation set up to advocate for patients.
03.
GENETIC ALLIANCE UK
A UK based umbrella membership for patient groups, that pioneered the long-standing Rare Disease UK campaign.
04.
GENOMICS ENGLAND
A company that partners with the NHS to provide whole genome sequencing in diagnosis, whilst also pursuing patient centred research in the development of new treatments.
06.
NORD
The National Organization for Rare Diseases is a educational resource empowering patient groups to learn more about advocacy and research.
07.
RARE BEACON
A UK based organisation that helps patient groups to form, grow and professionalise.
08.
EVERYLIFE
EveryLife empower the rare disease patient community to advocate for impactful, science-driven legislation and policy changes.
09.
RARE DISEASE INTERNATIONAL
An advocacy group for rare patients around the world.
10.
MEDICS 4 RARE DISEASES
A free education platform for medical professionals and students to learn more about rare disease to help improve diagnostic efficiency and subsequent treatment.
12.
IRDIRC
An organisation that aims to foster international collaboration in research for rare diseases.
13.
CORD
CORD is Canada's national network dedicated to advocating for rare disease patients’ rights and research.
14.
EATRIS
EATRIS is a European organisation that brings together resources and services for research communities to translate scientific discoveries into benefits for patients.
15.
REMEDI4ALL
A European platform for the repurposing of drugs in the treatment and cure of rare diseases.
15.
ERDERA
The European Rare Disease Research Alliance (ERDERA) has taken over EJPRD to deliver concrete health benefits to rare disease patients in the next decade by advancing prevention, diagnosis and treatment research.