One of our goals at CurePDE is to help families feel more connected and educated. While we hope that we can do a part of that, we also know there are other organizations that may resonate with you as well or have a local presence. We hope to keep up with as many of these groups as possible, but if you notice a group we have missed, any events or ways to connect, please let us know, we know it takes a team!
Organic Acidemia Association: https://oaanews.org/disorders/pde/
OAA Encompases PDE as an organic academia and has done a great job supporting families for decades.
National Organization for Rare Disorders (NORD): http://www.rarediseases.org/
NORD is a non-profit organization that helps people with rare diseases by providing information, support, and advocacy.
Orphanet: ://www.orpha.net/consor/cgi-bin/index.php
Orphanet is a website that provides information on rare diseases. It includes an inventory of rare diseases, a directory of patient organizations, and a directory of professionals and institutions. It also has a section on orphan drugs.
EU Research on Rare Disease: https://health.ec.europa.eu/non-communicable-diseases/expert-group-public-health/rare-diseases_en#research-into-rare-diseases
The EU’s strategic objective for rare diseases is to improve patient access to diagnosis, information and care. It assists in pooling scarce resources spread across the EU, enabling patients and professionals to share expertise and information.
EURODIS: http://www.eurordis.org/
EURORDIS is a non-profit organization that advocates for people with rare diseases in Europe. It provides information and support to people with rare diseases, advocates for policies that benefit them, and funds research. EURORDIS has a network of over 1,000 patient organizations in 74 countries and has received funding from the European Union and corporate donors.
International PDE Consortium Funded Project: http://www.pdeonline.org
The international PDE consortium is a large research collaboration that is trying to achieve several goals in the field of PDE, as well as initiate new lines of research
ClinicalTrials.gov
Is a database of clinical trials that are currently recruiting participants. There are a number of clinical trials for PDE treatments listed on ClinicalTrials.gov.
Epilepsy Foundation: https://www.epilepsy.com/
The Epilepsy Foundation is a non-profit organization that provides support and resources to people with epilepsy and their families. The organization has over 200 chapters and affiliates across the United States.
Treatable Intellectual Disability Endeavor: http://www.tidebc.org
Tide BC is a new care and research initiative that focuses on preventing and treating intellectual disability (ID). The organization has shown that some cases of ID are caused by treatable genetic conditions known as inborn errors of metabolism, many of which can be treated with diet or drugs.
CURE Epilepsy: https://www.cureepilepsy.org/
CURE Epilepsy is a non-profit organization that is dedicated to finding a cure for epilepsy. The organization was founded in 1998 by a group of parents who were desperate for answers to save their children. CURE Epilepsy funds research into all aspects of epilepsy, including basic mechanisms, acquired epilepsies, pediatric epilepsies, SUDEP, treatment-resistant epilepsies, and sleep and epilepsy.
