Knowledge = Empowerment Public Policy Program

Tiedostoa ei voi avata, koska JavaScript ei ole käytössä selaimessa. Ota se käyttöön ja lataa sivu uudelleen.

A virtual, patient-led, ‘innovative classroom’ style approach that will increase the number of patients who understand legislative issues that impact their access to treatments and can connect them to patient-led, fun and empowering opportunities to have a voice to impact change. Led by the International Foundation for Autoimmune & Autoinflammatory Arthritis (AiArthritis) - and persons living with AiArthritis diseases - we invite you to join this amazing opportunity to learn and, if you so choose, get more involved in sharing your stories with legislators.

Sign up and Michael, Volunteer & Administrative Assistant and person living with Psoriatic Arthritis - will reach out with more details about the many ways you can participate!

Kirjaudu Googleen, jotta voit tallentaa edistymisesi. Lue lisää

First Name *

Last Name *

Best email for contacting you about this project *

(Optional) WhatsApp (alternative way to receive messages in addition to email)

(Optional) Text/Mobile Number (alternative way to receive messages in addition to email)

City *

State or Province *

Country *

Zip Code or Postal Code *

How are you affected by AiArthritis diseases (If you are diagnosed, please share your diagnosis) *

Getting Involved

There are multiple ways you can get involved with our patient-led policy education and action activities. Whether you have been an advocate before OR no clue where to begin, we've got you covered. Sign up just to learn OR get involved with our team to do more.

We have listed several learning and action activities below that are available right away. Please select as many as are of potential interest to you!

The following items are open to everyone and accessible from our website. For webinar classes, we do these live and they are recorded. They are led by patient teachers and discussion guides with expert Class Speakers, too. *

Learning from our patient-created videos and glossary

Connecting to our library of great resources about these topics

Webinar classes

Field trips (virtually learning from conferences AiArthritis attends)

Podcast/Talk Show episodes and short clips about legislative issues

None of the above

Pakollinen

The following items involve activities for those interested in taking action. *

Share your story to influence access to therapy changes (written or on video)

Write letters/submit testimony to legislators (using AiArthritis templates)

Submit public comments from a patient perspective (survey, video, in person)

Participate in private learning discussions with AiArthritis staff

None of the above

Pakollinen

As part of this program we are going to create a dedicated team of volunteers who actively work with AiArthritis to write letters, talk to legislators, track legislative bills (USA) and potential laws that could impact access (international).

There will be levels of AiAdvocates. The advanced levels (which are available to those with experience, which can be learned through us or from your past) can include becoming extensions of our staff (i.e., sitting on coalition calls/meetings, reviewing and tracking bills, reporting important legislative action back to the other volunteers, etc.)

We are going to call these volunteers our AiAdvocates. Are you interested in being an AiAdvocate?

Yes

I'm not sure

Have you ever been involved in public policy efforts before? Select all that apply. Keep in mind, this program is for ALL levels - those with lots of experience to those with zero experience! *

Yes, I have participated in visits to legislators offices/D.C. fly-ins/Parliament visits, etc.

Yes, I have written letters or emails or called by legislator

Yes, I have shared my story about a topic (ex: step therapy)

Yes, I have served as a lead patient advocate to help other Patient Orgs with policy

Yes, I've submitted public comment (ex: to the FDA, EMA, CMS, etc)

No, I have never participated in public policy efforts as a patient voice

Muu:

Pakollinen

Is there anything else you'd like us to know around your interest in this program?

USA Only: There are new efforts in the USA to address the high cost of prescription drugs that are happening at the Centers for Medicare and Medicaid Services (CMS) and at a few states (and adding more states soon). This sounds good, lower prices! But there are MANY concerns we have - like losing access to our treatments, pushing pharmaceutical companies away from making new drugs, and question design being inaccurate because patients weren't reviewing them before sending out to the public.

To address this, AiArthritis is starting TWO national coalitions! One, traditional to the patient organization community, will be for organizations/companies to join. BUT, not typical (we don't believe this exists anywhere else) we are forming the associated Patient Coalition!!! If this sounds at all interesting to you, choose "yes" and we will share more!

Are you interested in learning more about these efforts?

Yes

Thank you!

That's all we need to get you signed up. Someone from our team will be in touch soon!

Lähetä

Tyhjennä lomake

Älä koskaan lähetä salasanaa Google Formsin kautta.

Tämä lomake luotiin verkkotunnuksessa International Foundation for Autoimmune & Autoinflammatory Arthritis. Ilmoita väärinkäytöstä

Forms