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Deborah Skolaski
Texas State Ambassador

What's Happening Now?

Join us for Texas Rare Action Network’s Rare Disease Day event on Thursday, April 19, 2018 from 11:00am-1:00pm at the Law Firm of Osha Liang LLP in Houston. There will be a panel discussion on “How research incentives and healthcare coverage decisions impact patient health and access to new studies and drugs.” Speakers to be announced. Lunch will be provided. Great opportunity to discover how the new tax cuts will impact the pharmaceutical industry, specifically in Texas including the Houston Medical Center, and Texas rare disease patients. CLICK HERE TO REGISTER TODAY!

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.

Hurricane Harvey Emergency Relief Resources for Families with Rare Diseases in Texas

Hurricane Harvey has 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 Hurricane Harvey 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.

Our hearts go out to those who have been hit by Hurricane Harvey over the last week. Many of our member organizations, Rare Action Network members, and friends to NORD have been impacted by this record breaking storm. We’re extending our warm thoughts to these folks and all who have been devastated by this storm.

Texas needs your help!
Utilize these Rare Action resources to put rare diseases on the map in your state. If you need further assistance  or have additional questions on how to take action in Texas, please contact your State Ambassador, Riley Lee.

State Report Card

This Report Card serves as an evaluation of the state progress in implementing policies pertinent to the rare disease community. With it, NORD hopes to provide a road map for the rare disease community of where each state can improve and, ultimately, push forward the discussion on rare disease public policy.

TX State Report Card (2016)
Medical Foods 90%
Prescription Drug Cost Sharing 0%
Medicaid/CHIP Eligibility 43%
Newborn Screening: RUSP Secondary Conditions 81%
Biosimilar Prescriber Communication 100%
Step-Therapy Protection 60%

Scoring for State Policies

90%-100% = A

80%-89% = B

70%-79% = C

60%-69% = D

0%-59% = F

State Information

David Mattax, Commissioner

Texas Department of Insurance
PO Box 149104
Austin, Texas 78714


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:
or 463-6515 in Austin

State Health Insurance Consumer Assistance Program

Consumer Assistance Program Email:

Show pride for rare in your state
Show pride for rare in your state

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