Author: udnfinfo

26 Jan

Posted at 17:01h in Mental Health & Support, Resources

Rare and Undiagnosed Network (RUN) is a group of advocates, patients, families, researchers, and healthcare providers who share a same mission and vision as PEER: to empower rare and undiagnosed patients and their families with genomic information and community through advocacy, networking and support.https://rareundiagnosed.org/...

26 Jan

Posted at 17:01h in Community Education, Resources

RARE Concierge, Global Genes’ patient services arm, is the first point of contact for many undiagnosed and newly diagnosed patients and families looking for answers, access to genetic counseling and testing, specialized care, clinical trials, resources, support, and connection. https://globalgenes.org/connect/rare-disease-patient-services/  Global Advocacy Alliance provides support to patient...

26 Jan

Posted at 17:00h in Diagnosis, Resources

NORD is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 280 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research,...

26 Jan

Posted at 16:59h in Resources

The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit, nonpartisan organization dedicated to advancing the development of treatment and diagnostic opportunities for rare disease patients through science-driven public policy. The Foundation does not speak for patients, but instead provides the training, education, resources and...

26 Jan

Posted at 16:58h in Resources

The coronavirus (COVID-19) pandemic is an unprecedented public health crisis, and especially stressful for people who are living with chronic health conditions. The Global Healthy Living Foundation (GHLF) is committed to being a reliable source of information, community, and support for patients and their families...

26 Jan

Posted at 16:57h in Resources

GARD provides multiple resources for individuals with rare diseases. There is a searchable database that will give easy to understand information on more than 6,500 conditions. If you can’t find the information you need within the database, you can contact one of GARD’s information specialists....

26 Jan

Posted at 16:28h in Resources

Open Treatments is a software platform that allows patients, families, and caregivers to develop a streamlined treatment plan for rare diseases. Open Treatments provides a roadmap of the drug development pathway, which covers every point of this process, from planning to clinical trials. Open Treatments...

26 Jan

Posted at 16:27h in Resources

All of Us is a research program funded by the National Institutes of Health (NIH) that is based on precision medicine, where treating a disease is tailored to each individual rather than a “one size fits all” approach. People who enroll in this program may...

26 Jan

Posted at 16:26h in Resources

UDN PEER created a document entitled “Questions to Ask” that aims to help individuals formulate the next steps of their undiagnosed journey and communicate with their healthcare team. We have different sections based on whether a genetic diagnosis was/was not given.Some example questions are:Will they...