Hard Cases: Investigating Rare & Tough Diseases

Dr. William Gahl is one of the last, best hopes for people suffering from rare, debilitating, and undiagnosed medical conditions. Lara Logan reports.

Reference: CBS News (2012, May 20). Hard Cases: Investigating Rare & Tough Diseases. Retrieved from https://www.youtube.com/watch?v=Trb9mPcpVy4&list=PL9AC32832ED23BF6D

Mystery Undiagnosed: Awareness Video

One of my all time favorite Undiagnosed Videos:

Reference: 

Kelly Patricia. (2012, October 29). Mystery Undiagnosed. Retrieved from https://www.youtube.com/watch?v=d7C2u1nQawg

BLOG: sickgirldiary.tumblr.com
TWITTER: https://twitter.com/StrongerNowXO
FACEBOOK PAGE: https://www.facebook.com/FindingStrengthThroughPain

GARD: Tips for the Undiagnosed

Here’s a great tutorial from the Genetic and Rare Disease Information Center at the NIH with various tips and resources available for individuals still searching for a diagnosis.

 

You can also visit the GARD Website for more information and links. Their website is https://rarediseases.info.nih.gov/resources/pages/24/tips-for-the-undiagnosed

Today is Undiagnosed Day – April 29, 2016!

A Message from the Rare and Undiagnosed Network Wesite:

What does “Undiagnosed” mean?

“An undiagnosed disease is a medical condition without a known cause despite a lot of evaluation.”

What is Undiagnosed Day?

Undiagnosed Day takes place on the last Friday of April each year. The main objective of Undiagnosed Day is to raise awareness among the general public and decision-makers about undiagnosed diseases and their emotional, physical and financial impact on the lives of the patients and their families.

The campaign targets primarily the general public and also seeks to raise awareness among policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in undiagnosed diseases and genetics. Since 80% of rare and undiagnosed diseases have identified genetic origins, it is imperative to raise awareness for the importance of genetics in the diagnostic odyssey of undiagnosed patients.

#UndiagnosedDay

We created the Undiagnosed ribbon from Ava Szajnuk’s drawing. Ava is eight years old and Undiagnosed. Since zebras represent the rare community, we envisioned having a zebra ribbon with baby blue and baby pink colors added to it. Undiagnosed community is a part of the rare community but they stand alone as well. All rare diseases were once Undiagnosed.

Help us raise awareness for Undiagnosed Day on April 29, 2016.

Thank you for your continued support of the Undiagnosed community.

Please email gina@rareundiagnosed.org if you would like to join our Undiagnosed Alliance.

Gina Szajnuk
RUN Co-founder and Executive Director
RUNmyDNA Co-founder
Utah Rare 2016 Committee Chair
NORD Utah State Ambassador
W http://www.rareundiagnosed.orghttp://www.runmydna.comhttp://www.utahrare.orghttp://www.rarediseases.org
E ginaszajnuk@gmail.com – gina@rareundiagnosed.org – gina.szajnuk@rareaction.org
P (310) 883-4353

(Retrieved from http://rareundiagnosed.org/undiagnosedday-governor-herberts-declaration-april-29/)