Alaska Rare Action Network

You're invited to NORD's Alaska and Hawaii Rare Action Network COVID-19 Virtual Discussion Group

Tuesday, May 26, 2020

12:00 pm - 1:00 pm (Alaska Time)

Please join NORD's Hawaii and Alaska Rare Action Network (RAN) Virtual COVID-19 Discussion Group to connect as a community to exchange stories and experiences with respect to the impact of COVID-19. Come ready to share your concerns on COVID-19, ask questions, and hear updates from NORD. These meetings are open to all--you do not have to be a RAN member.

Discussion topics will include how this pandemic has affected your rare disease treatment, medication access, and access to telemedicine. But the goal is to discuss any topics of concern to you.

Alone we are rare, together we are strong. We hope you can join us! Questions? Email [email protected].

REGISTER HERE:

Alaska & Hawaii COVID-19 Virtual Discussion Group

Stone Soup Group: Alaska Rare Disease Care Survey

Needs Assessment - Rare Disease Care Take this survey powered by surveymonkey.com. Create your own surveys for free.

NORD Launches Financial Assistance Program for Rare Disease Community Members Impacted by COVID-19 - NORD (National Organization for Rare Disorders) Washington, DC, April 15, 2020— At this time of crisis and with the health, safety and well-being of patients and caregivers as its top priorities, the National Organization for Rare Disorders (NORD®) today launched its COVID-19 Critical Relief Program to provide much-needed assistance to members...

NORD's Peter L. Saltonstall on Coronavirus Prevention and Risk for the Rare Community - NORD (National Organization for Rare Disorders) As information on the coronavirus, COVID-19, dominates the news, we want to share with you guidance from the Centers for Disease Control and Prevention (CDC).

🙌🏼 Fabulous outcome!

BREAKING NEWS: NORD is pleased to announce a major victory in the advocacy of newborn screening at the federal level: the Advisory Committee for Heritable Disorders in Newborns and Children (ACHDNC) was just reinstated by Health and Human Services! This means that more rare diseases can now be considered to be added to the federal Recommended Uniform Screening Panel.

This successful change in policy is the result of the continued advocacy of the rare disease community, and in particular, the patient and caregiver advocates who joined NORD in meeting with HHS's Assistant Secretary Admiral Giroir and sharing how important it is to allow for more rare diseases to be considered for newborn screening. Huge thank you to our advocates and to ADM Giroir for standing up for the rare disease community!

We had the pleasure of meeting with Erin Stuart, Staff Assistant for Alaska Senator Dan Sullivan. Another great meeting on the hill, advocating for individuals and families affected by rare disease.

We had a great meeting with Congressman Don Young, advocating for individuals and families affected by rare disease ! 🗣🦓

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Happening NOW! More than 800 advocates from around the country are gathering on Capitol Hill for to share their unique stories. Thank you to Horizon Therapeutics for sponsoring this amazing event! Tag yourself!

FYI!

Next week, we will welcome over 800 rare disease advocates to Washington, DC for Rare Disease Week on Capitol Hill 2020. If you are unable to come to DC next week, here are ways that you can be a part of Rare Disease Week and participate right from your own home. Please share with your family and friends so they can also take part.

1. Monday the 24th: Watch the FDA's Rare Disease Day Public Meeting livestream https://bit.ly/39UMTZj

2. Tuesday the 25th: Watch the Rare Disease Congressional Caucus briefing livestream https://bit.ly/2PeXuqh

3. Wednesday the 26th: Watch the Rare Disease Week Legislative Conference livestream https://bit.ly/2PfezAf

4. Thursday the 27th: Email and/or call your Members of Congress and ask Congress to support the Rare Disease Community. Take action here--> https://bit.ly/2T9dH14

5. Friday the 28th: Watch the Rare Disease Day at NIH livestream https://bit.ly/39Vfq10

A topic for future discussion ... We're preparing to head to Washington DC for Rare Disease Week on Capitol Hill. Rare Disease Legislative Advocates (RDLA) shared the following score cards for our representatives. Looks like we have a lot of work to do!

Lisa Murkowski - https://www.votervoice.net/iframes/EveryLife/1/Scorecard/Pdf/11

Dan Sullivan - https://www.votervoice.net/iframes/EveryLife/1/Scorecard/Pdf/48877

Don Young - https://www.votervoice.net/iframes/EveryLife/1/Scorecard/Pdf/12

www.votervoice.net

Have you sought out-of-state care through Medicaid? Let us know! NORD is looking to hear from rare disease patients who have sought or are seeking care from an out-of-state specialist while enrolled in Medicaid.

National Organization for Rare Disorders - Take Action

I planned to share what we’re doing for rare disease month the other day but got knocked out with influenza in Vegas! I’ll be sharing and looking for your feedback by the end of the week. So sorry for the delay. Stay healthy! 😷Rene