Utah HB211: Rare Disease Advisory Council
Action Alert: The House of Representatives will consider HB211 this Friday, February 15, 2019 at 2:30, in the House Chamber. Community members can gather to watch and listen from the gallery as Representative Lee Perry presents the bill to the full House. Our daughter, Ava Szajnuk, is honored to have been asked by Representative Lee Perry to sit with him during his presentation. Please join us in support of HB211. Our numbers can help encourage support!
The House Chamber is located on the westside of the Capitol building, opposite the Supreme Court Chamber. Visitors hoping to listen must enter from the doors on the 4th floor on the southwest side, to be able to watch from above.
Join us if you can in person, but please be aware there will not be any opportunity to speak to the legislature as they are in session, and we are there to observe and silently support by filling the gallery/viewing area. A livestream of the presentation can be viewed here: HB211 at 2:30p Friday, February 15th, 2019
Ava Szajnuk, 11 years old
Ava and I were both honored to support Representative Lee Perry on February 11, 2019. It meant so much to our family to represent our rare and undiagnosed community. A special thank you to Stan, Jen & Talan Summers for including our family in this very blessed opportunity.
Thank you Representative Lee Perry for sponsoring the bill. Thank you Representative Steve Eliason for co-sponsoring the bill and to the House Health & Human Services committee for moving the bill forward. Thank you Utah Rare Action Network, Lorenzo Botto and everyone at The University of Utah for your support of the bill.
Collaboration is key to making the lives better for our rare and undiagnosed community here in Utah.
Proposal for Rare Disease Advisory Council HB211, Utah House, Health & Human Services Committee, sponsored by Rep. Lee Perry, witness statement from Justine Case of Rare Action Network (RAN).
Now is the time to contact your own state Rep. to support the bill.
Here is a direct link to find your Utah State Representative:
https://le.utah.gov/GIS/findDistrict.jsp
Sample Letter. It is key that letters be brief, direct, and courteous:
Dear Representative [Name],
My name is [ Name ] and I am your constituent. Please support HB211, the proposal for a Rare Disease Advisory Council (RDAC). This would mean so much to my family, because we are impacted by [name condition if comfortable, if not just say ‘Rare disease’].
Having a RDAC in Utah would help me by formally unifying the Rare disease community with professionals to collaboratively assess community needs and make recommendations for legislation and policy that can benefit all Rare disease families.
While Rare diseases individually are unique, together 1 in 10 people have one. We need this unification to support change to benefit the 10% of Utahns who live with Rare disorders.
Thank you for your consideration,
[Your Name]
[City], UT
ABOUT RAN
The mission of the Rare Action Network ® (RAN) is to connect and empower a unified network of individuals and organizations with tools, training, and resources to become effective advocates for rare diseases through national and state based initiatives across the United States.
Contact Information:
Jennifer Summers, Utah Rare Action Network State Ambassador
Jennifer.summer@rareaction.org
Justine Case, Utah Rare Action Network State Ambassador
Justine.case@rareaction.org
ABOUT RUN
RUN stands for the Rare & Undiagnosed Network. We’re a group of advocates, patients, families, researchers, and healthcare providers who share the same mission and vision: To empower rare and undiagnosed patients and their families with genomic information and community through advocacy, networking and support.
Contact information:
Gina Szajnuk (Zanik)
Co-founder and Executive Director
E: ginaszajnuk@gmail.com
C: (310) 883-4353
To Read: The Szajnuk Journey
