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First we would like to thank everyone that wrote a letter to congress.  Some of your letters got us a meeting with your congress people, THANK YOU!

Now we have the attention of the FDA.  We need your stories to present to them.  They don't allow individual patients to email them directly but they are asking us to collect the emails/letters and send them all as one group.  If you need a kickstart on what or how to write please check out page 5 of our grassroots toolkit that is specific to the FDA.

You can then send your letters via email to bb@rubicondc.com.

As always let us know if you have any questions

Michele Rayes

HypoPARAthyroidism Vice Chair

We Need Your Help!

                                                   Hypoparathyroidism Patients Need an FDA-Approved Therapy as Quickly as Possible.

Thanks to an ongoing FDA commitment to place the patient at the core of the drug development process, people living with Hypoparathyroidism have an opportunity to tell the FDA and Members of Congress what it is like to live with this disease.

What: Right now, officials at the FDA are considering approval of multiple new medications to treat hypoparathyroidism. We need to do all we can to educate the FDA and Members of Congress with jurisdiction over FDA about the impacts of hypoparathyroidism on patients and the urgent need for approval of effective therapies.   

Why: Currently there are no safe and effective FDA-approved treatments for Hypoparathyroidism. This leaves patients who are suffering with this disease to have a poorer quality of life and in some cases this disease can be debilitating.

The voices of those with a personal stake in each issue resonate the loudest on Capitol Hill and throughout government. That is why it’s crucial Americans from the hypopara community––patients and providers alike––raise our voices to break through the noise.

How: Visit the link to raise your voice to educate the FDA and Members of Congress about this pressing issue, and to help expedite treatment options for those living with hypopara: https://www.votervoice.net/Hypopara/home.

The attached toolkit will help you elevate your voice where it matters the most: from how to contact legislators and the FDA, to how to tell your patient story in the most compelling, personal way possible.

When: The sooner the better! The link will expire in mid-September.

For more information or questions, please reach out to Michele Rayes at HypoPARAthyroidism Association at mrayes@hypopara.org

RARE DISEASE CAUCUS

The following U.S. Representatives and Senators are members of the Rare Disease Caucus.  As such we would like to target them in our campaign to advocate for new treatment options for HypoPARAthyroidism

Rep. G.K. Butterfield NC-1 Kaitlin Vansant (kaitlin.vansant@mail.house.gov)
Rep. Doris Matsui CA-6 Christina McCauley (christina.mccauley@mail.house.gov)
Rep Debbie Dingell MI-12 Timothy Huebner (timothy.huebner@mail.house.gov)
Rep. Lori Trahan MA-3 Alexandera Karabatsos (alexandera.karabatsos@mail.house.gov)
Rep Sanford Bishop GA-2 Jonathan Halpern (jonathan.halpern@mail.house.gov)
Rep Chellie Pingree ME-1 Evan Johnston (evan.johnston@mail.house.gov)
Rep Lizzie Fletcher TX=7 Anne-Marie Boisseau (anne-marie.boisseau@mail.house.gov)
Senator Tina Smith MN Kripa Sreepada (kripa_sreepada@smith.senate.gov)
Senator Jeff Merkley OR Jackson Thein (jackson_thein@merkley.senate.gov)
Senator Amy Klobachar MN Max Hurst Max_hurst@klobuchar.senate.gov)
Senator Bernie Sanders VT Dhishal Jayasinghe (dhisal_jayasinghe@sanders.senate.gov)
Rep Diana Degette CO-1 Arden Parker (Arden.parker@mail.house.gov)
Rep Mike Doyle PA-18 Joe Telano (Joseph.Telano@mail.house.gov)
Rep. Jan Schakowsky IL-9 Gidget Benitez (Gidget.benitzel@mail.house.gov)
Rep Paul Tonko NY-20 Darian Harbeck (Darian. Harbeck@mail.house.gov
Rep. Scott Peters CA-52 Rachel Dugan (Rachel.dugan@mail.house.gov)
Rep. Darren Soto FL-9 Nicole Mclaren (Nicole.mclaren@mail.house.gov)
Rep. Tom O’Halleran AZ-1 Adam Finkle (Adam.finkle@mail.house.gov
Rep. Kathleen Rice NY-4 Michael Demakos (michael.demakos@mail.house.gov
Senator John Hoeven ND Lauren Limke (lauren_limke@hoeven.senate.gov)
Senator Mike Braun IN

Ready to raise your voice for an approved hypopara treatment? When you click on the link below, you can contact your representatives in Congress and share your story and ask them to do everything they can within the regulatory framework to get new treatments approved for Hypoparathyroidism. Members of Congress can write to the FDA on behalf of their constituents to ask the agency to do everything within FDA regulations to help patients get access to treatment.  Members of Congress will help raise the voices of the community

 Here’s how it works:

·       Edit and personalize the template email (especially in the bolded section) as you wish. The more you share your personal experience with hypopara, and how your life would be improved with an FDA-approved treatment, the more impactful your letter will be.

·       Enter your zip code

·       Click to submit the letter directly to your representative.

If we all take action, we can put productive pressure on our representatives, and the FDA, to hear our stories and put a hypopara treatment back on the market.

Click here to raise your voice.