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Texas

2021 Texas Rare Disease Day Virtual Event

Sunday, February 28, 2021
2:00pm – 3:00pm CST

Texas Rare Action Network and Baylor College of Medicine/Texas Children’s Hospital Genetics invite you to join patients, families, caregivers and other rare disease community members at this important virtual event to educate Texas legislators and the general public on the challenges faced by rare disease patients and their families. We will explore how the formation of a Rare Disease Advisory Council (RDAC) could address the needs of those living with a rare disease in Texas by providing stakeholders an opportunity to make formal recommendations to state leaders about the most important issues they face, including the need for increased research and awareness, knowledgeable health care providers, and timely access to affordable diagnostics, treatments and cures.

REGISTER HERE 

 

Deborah Skolaski
Texas State Ambassador
[email protected]

Molly Plant
Texas Community Engagement Liaison
molly.plant@rareaction.org

COVID-19 Resources & Information

State Resource Page

The Texas government has created this helpful resource website in response to COVID-19.  https://texas.gov/#covid19

Telemedicine FAQ: CLICK HERE

What's Happening Now?

RAN_Megephone_RGBWould you like to volunteer to assist in hosting a local community awareness event? Do you have an opportunity for Texas’ Rare Action Network to attend your event? Contact your State Ambassador today and learn more. Please check back regularly for news of upcoming events and activities in Texas.

Baylor Undiagnosed Disease Network

The Undiagnosed Diseases Network (UDN) is a research study funded by the National Institutes of Health Common Fund, made up of medical and research centers across the United States working to improve diagnosis and care of patients with undiagnosed diseases. Through this study, we hope to both help individual patients and families and contribute to the understanding of how the human body works.

Due to the complex nature of the body and the diseases being investigated, we cannot accept all applicants into the study. However, we do fully review all applications we receive. For more information about the UDN and the application process, please visit: https://undiagnosed.hms.harvard.edu/sites/baylor-college-of-medicine/

In order to make meaningful change in the lives of rare disease patients and their families in the state of Texas, we need you! Become active with the Rare Action Network by joining and utilizing the resources available on this website to take action and create change.

State Report Card

In this fifth edition of NORD’s “State of the States Report,” we analyze all 50 states and Washington, D.C., on eight issues that impact the rare disease community. Each state has their own individual report card (as seen below), but for more background and an explanation of the grading methodology, please download the full report.

State Information

Emergency Relief Resources for Families with Rare Diseases in Texas

Hurricane Harvey left thousands rid of their belongings and forced out of their homes. For individuals living with a rare disease, the impact of such natural disasters can be even more detrimental. Together, NORD staff worked with our Texas Rare Action Network State Ambassador, Debbie Skolaski to create the Texas Emergency Relief Resources packet, a list of emergency relief resources available for download that may be helpful for rare disease families in the Houston area.
 

Kent Sullivan, Commissioner

Texas Department of Insurance
PO Box 149104
Austin, Texas 78714

512-676-4737

In order to get the issues that affect your life addressed, connect with your state representative by using the tool on our website.

Click Here

Online Complaint Submission

Email for Assistance: [email protected]
1-800-252-3439
or 463-6515 in Austin

State Health Insurance Consumer Assistance Program

Consumer Assistance Program Email: [email protected]
1-800-252-3439

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