Rare Disease Awareness Club Header
Iowa State's Rare Disease Awareness Club (RDAC) works to spread awareness about rare conditions and the issues faced by the 1 in 10 Americans affected by them. What is a rare disease? In the United States a rare disease is defined as any disease, disorder, illness, or condition affecting fewer than 200,000 people in the country at any given time.

 

 

Rare Disease Day 2022 - February 24th @6pm on Zoom

Iowa State University's fifth annual Rare Disease Day event will be held on February 24th, 2022. This event will consist of a club introduction and brief overview of rare disease issues from our president, Emma Snavely, followed by our keynote speaker. Our keynote speaker is Jill Madden, PhD, MSc, CGC. She is an ISU alumna and currently works for the Manton Center for Orphan Disease Research Center at Boston Children’s. Dr. Madden’s presentation will give insight into rare disease research and will be an excellent way for the community to learn about rare diseases in general. 

 

Please access the meeting on February 24th via this Zoom invite:

Time: Feb 24, 2022 06:00 PM Central Time (US and Canada)

Join from a PC, Mac, iPad, iPhone or Android device:

 

    Please click this URL to start or join. https://iastate.zoom.us/j/95365209321?pwd=WXQwOFV6U05Uc2o4Ui8yQ1dOUmNJQT09

    Or, go to https://iastate.zoom.us/join and enter meeting ID: 953 6520 9321 and password: 432119

Join from dial-in phone line:

 

    Dial: +1 301 715 8592 or +1 312 626 6799

    Meeting ID: 953 6520 9321

    Participant ID: Shown after joining the meeting

    International numbers available: https://iastate.zoom.us/u/abpgjpLKwu

 

RDAC Information

The Rare Disease Awareness Club is dedicated to spreading awareness on the Iowa State University campus and Ames community about rare conditions and the issues faced by the individuals who live with them! RDAC at Iowa State is affiliated with NORD, the National Organization for Rare Disorders. We meet once a month to discuss topics important to the rare disease community and hear from speakers who have personal experiences with or extensive knowledge on rare diseases. 

Quick Facts:

A rare disease is any disease, disorder, illness, or condition affecting fewer than 200,000 people in the U.S. at any given time.
There are over 7,000 rare diseases that, together, affect 1 in 10 Americans.
On average, it takes 4.8 years for a rare disease patient in the U.S. to receive a proper diagnosis.
Only 5% of rare diseases have FDA-approved treatments.

 

There are always leadership options available! Fill out this Google Form to get involved:
https://forms.gle/HdHx2dQuGL2TpzvL7

Club email: isu.rdac@gmail.com

Club website: www.stuorg.iastate.edu/site/rdac (use this link to join)

Facebook page: www.facebook.com/RDACISU

 

ARCHIVE

PAST MEETING - DECEMBER 2021

December 1st @6pm on Zoom

Iowa State student, Abigail Stallard, will join us to share her experience with Ehlers-Danlos Syndrome (EDS). Our former president, Scarlett Eagle, who now works for the Ehlers-Danlos Society, will share information on the rare disease nonprofit industry. 

 

Time: Dec 1, 2021 06:00 PM Central Time (US and Canada)

Join from a PC, Mac, iPad, iPhone or Android device:

    Please click this URL to start or join. https://iastate.zoom.us/j/91491905826?pwd=aDZVSVZxeDMwZnkzWVJoTW14SDJJZz09

    Or, go to https://iastate.zoom.us/join and enter meeting ID: 914 9190 5826 and password: 231322

Join from dial-in phone line:

    Dial: +1 301 715 8592 or +1 312 626 6799

    Meeting ID: 914 9190 5826

    Participant ID: Shown after joining the meeting

    International numbers available: https://iastate.zoom.us/u/aeePD3Xb6S

 

PAST MEETING - OCTOBER 2021

October 21st @6pm on Zoom

The spotlight condition for October is mixed connective tissue disease (MCTD). Our guest speaker is Alannah Skinner, an Iowa State student and RDAC cabinet member, who will be sharing her experience with MCTD, autoimmunity, and endometriosis. 
    

PAST MEETING - SEPTEMBER 2021

September 30th @6pm on Zoom

Our speaker for this meeting was Whitney Feldman. Whitney is the mother of William Feldman, a little boy with SLC6A1. SLC6A1 is an ultra-rare neurological condition in young children. 

Some SLC6A1 Resources:
https://slc6a1connect.org/
https://rarediseases.org/rare-diseases/slc6a1-epileptic-encephalopathy/
https://www.amestrib.com/story/news/2021/03/24/story-city-iowa-couple-seeks-feldman-cure-their-son-rare-disease-slc-6-a-1/4669807001/