Friday, 05 January 2018 14:41

Rare Disease Day 2021

There has been great progress in rare disease research, in big part thanks to the advocacy work of the rare disease patient community. Patients are already participating in research. And in some cases patients have taken the reins themselves to fund their own research. However, the fact remains that there…
Tuesday, 20 December 2016 05:18

Kasich Signs Six Bills

COLUMBUS – Today Governor John R. Kasich signed the following bills into law: H.B. 166 (Green) extends the deadline for filing an application for the homestead exemption or 2 1/2% property tax rollback to the end of the tax year, to require that auditors certify Local Government Fund allocations to…
EthansCure was present at the Ohio Capital in Columbus supporting Rare Disease Day. We would like to thank NORD for organizing the event and helping us all to raise awareness for barter syndrome. Daniel Hoffman spoke on behalf of EthansCure educating those present on Bartter Syndrome and Tier 3 Drugs.…
We would like to thank all of those for their support this year and joining our coalition against this disorder. May you all have a blessed Christmas and may next year bring us closer to the Cure. Happy Holidays!!!
Chairwoman Jones and members of the Senate Medicaid and Health and Human Services Committee; I would like to thank all of you for allowing me to testify today and personally thank both Senator, Cafaro and Schiavoni for introducing Senate Bill 281 to the Ohio Senate; nominating the month of May…
Thursday, 27 February 2014 07:04

EthansCure Supports Rare Disease Day 2014

HOWLAND - It's not just a handprint on a poster. It's a mark of support for people who suffer from diseases most people never knew existed. Students at North Road Intermediate School in Howland joined painted hands to help raise awareness of conditions such as Bartter Syndrome. There's only a…
Thursday, 27 February 2014 06:46

Meeting with Senator Capri Cafaro

Capri Cafaro, District 32 of the Ohio Senate has agreed to co-sponsor and conduct a joint resolution with Senator Joe Schiavoni to promote an Awareness Day for Bartter and Gitelman Syndrome. We met with Senator Cafaro shortly after our meeting with Senator Joe Schiavoni. The Bartter Syndrome Foundation would like…
Thursday, 27 February 2014 06:31

Meeting with Senator Joe Schiavoni Featured

Senator Joe Schiavoni, District 33of the Ohio Senate has agreed to assist the Bartter Syndrome Foundation in creating an Awareness week for Bartter and Gitelman Syndrome. Senator Schiavoni has proposed a resolution for nominating a week in the month of May to be dedicated to spreading awareness and advocacy for…
Thursday, 27 February 2014 05:56

Bartter & Gitelman Syndrome Awareness Day

Bartter syndrome is not a single disorder but rather a set of closely related kidney disorders that cause an imbalance of potassium, sodium, chloride, and related molecules in the body. It is thought to be caused by a genetic mutation in the kidneys, resulting in the body's inability to reabsorb…

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