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Rare Disease Organizations

According to Global Genes, there are approximately 7,000 rare diseases of which HE/SREAT is only one. Furthermore, they state that 80% of these diseases are genetic. Each day, new rare and genetic diseases are being discovered. Because we are one small part of a much larger rare disease community, we collect information and take part in rare disease and patient discussions via social media to learn from one another and to help one another. 

On this page we are sharing a few links that may help patients, families, caregivers, or anyone seeking more information on rare disease research, initivies, and organizations that may also be able to help them. 

In the United States:

National Organization for Rare Diseases (United States)
For over 30 years, NORD has lead the way in empowering the rare disease community.

http://rarediseases.org/

Check Orphan – rare, orphan, and neglected diseases
http://www.checkorphan.org/

Rare Connect
Connection rare disease patients globally

https://www.rareconnect.org/en
Global Genes is a leading rare disease advocacy organization with global reach to the worldwide rare community of patients, caregivers, advocates and clinical partners.
https://globalgenes.org
WeHealth
Join a network of recruiters to connect patients with new treatments.

http://wehealth.co/
Care to the People
connecting patients and resources to each other

http://caretothepeople.com/
Madison’s Foundation
Moms and Dads in search of needed support

http://www.madisonsfoundation.org/
NIH Health Hotline
Toll-free numbers from the National Library of Medicine’s Health Hotlines database

https://healthhotlines.nlm.nih.gov/
Undiagnosed Disease Network
The Undiagnosed Diseases Network (UDN) is a research study that is funded by the National Institutes of Health Common Fund

http://undiagnosed.hms.harvard.edu/apply/

IN CANADA:

CIHR Team for Rare Diseases (Canada)
A Canadian research team focusing on rare disease policy.
http://rare-diseases.ca/


In the United Kingdom:

Rare Disease UK (RDUK) is the national alliance for people with rare diseases and all who support them. We believe that everyone living with a rare disease should be able to receive high quality services, treatment and support.
http://www.raredisease.org.uk/

The Children’s Trust
For children with brain injury (United Kingdom)
https://www.thechildrenstrust.org.uk/
Just 4 Children
Just4Children is passionate about the relief of sickness and preservation of health of children in the UK
http://just4children.org/


Find Our Page On The Mighty
More than half of Americans are facing serious health conditions or medical issues. They want more than information. They want to be inspired. The Mighty publishes real stories about real people facing real challenges.

AE Alliance
"The Autoimmune Encephalitis Alliance promotes collaboration to improve care, find a cure and create community so that no one faces autoimmune encephalitis alone.


The Encephalitis Society
"The Encephalitis Society is an International organization providing information and support for all causes of Encephalitis."


Encephalitis Global
"Encephalitis Global is a U.S.A. 501(c)(3) non-profit organization formed in 2005 as an alliance connecting encephalitis survivors and caregivers around the world."


Mark2Cure
Scientific literature is growing at a rate of more than 2 new articles every single minute. It is impossible for scientists to consume and understand the rapidly expanding ocean of biomedical literature. You can help biomedical researchers find the information they need to discover cures faster.


RareConnect.org
"Connecting Rare Disease Patients Globally"


RareDisesases.org
"Alone we are rare. Together we are strong.®"


Contact a Family
"For families with disabled children."


Madison's Foundation Provides information about rare diseases and connects parents whose children have the same rare disease.


NIH Health Hotline
Toll-free numbers from the National Library of Medicine's Health Hotlines Database.


HE Notebook - Wordpress Site
A great blog of an HE patient with a trove of information, personal stories, and links to medical studies.