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15 July 2021

European Migraine Patients Needed for Focus Group

 



admedicum is looking for people living in Denmark, Poland, or the Czech Republic with severe forms of migraine to provide feedback on the usefulness, the burden, and the needs of a migraine patient to participate in a clinical trial.

admedicum is dedicated to ensuring that the interests and experiences of patients are better integrated into research, development, and provision of health care.

Find out more at: www.admedicum.com

About the Focus Group

This will be an online focus group with a total of 6 patients. The goal of the focus group is to understand how useful you would consider several elements in a clinical trial to participate as a migraine patient. For example, would you see any burdens for those elements and your needs if you took part in a clinical trial?


Requirements to Participate

To participate in the focus group, you would need to have:
  • At least 8 migraine days/month on average
  • Access to a computer or tablet with a camera


More Details

The online focus group will use Zoom with appropriate visuals, sounds, and sufficient off-camera time and is planned to begin around the end of August. Each session is scheduled for 1.5 - 2 hours with a total of two (2) sessions. Little preparation is needed for participants before the sessions. Data protection is ensured and you will receive compensation for your participation.

If you are interested in participating, we would like to ask you to complete a short online survey that takes approximately 5 minutes of your time:




10 June 2021

HDPAN Advocacy Day of Action



What is the Headache Disease Policy Action Network?

The Headache Disease Policy Advocacy Network (HDPAN) is a new multi-stakeholder group working together to create, implement, and support advocacy and policy initiatives that benefit the headache disease community. HDPAN (pronounced head pain) was formed in early 2021 with an ambitious goal in mind: launching a four-year strategic plan that would take a proactive approach to advocacy to make real and strategic gains while the community continued to address regular policy and access challenges. The thought of any patient living in pain and unable to access relief motivated our decisions. We’ve had individual successes addressing state-based issues as they arise, but we know policy changes come from the top down. We must focus on system-wide change.

The headache disorder and migraine disease community is growing. As more achieve diagnosis and begin to seek care, advocates for health are stepping forward and stepping up. This has presented opportunities to not only advance research and raise public awareness but also shed light on the need for meaningful policies that can help headache and migraine patients access much-needed care.

Why Advocacy Matters

In recent years, the migraine community has been called to action with intensifying frequency. Longtime advocates have been joined by newer groups to address complex value assessments, raise awareness with and increase support from Capitol Hill, and break down payer access challenges to innovative treatment options. We have made partnerships with like-minded advocates in other communities such as the veterans' population. We have acknowledged disparities in care and sought to address them. At every turn, the community has risen to the occasion, set record levels of patient and clinician engagement, and created change.

As advocacy efforts have deepened, adding new members and successes, there has also been an increased need to have a network to serve as strategic counsel to help identify ways the community could better leverage capacity on advocacy and policy initiatives. No single group can do this work alone - but we can find more ways to cross-collaborate in order to maximize resources and get to goals faster.

Join Us on June 16th

On June 16th, HDPAN will be asking all of our migraine and headache community advocates, friends, family, and supporters to join us by taking part in our first annual Advocacy Day of Action. On this day, you will be reaching out to your Representative in Congress to ask for their support of a House Resolution (H.Res), designating June 2021 as Migraine and Headache Awareness Month. This Resolution will serve to educate our Representatives about the substantial impact migraine and headache disease has on our community and show their support for us. 

This Resolution is being led by Representative Madeleine Dean (D-PA-4th). Sign up to join our virtual webinar on June 14th to learn more about this day.

Be a part of advocacy action and join our Voter Voice Campaign!

https://www.votervoice.net/AHDA/campaigns/85298/respond

RetreatMigraine 2021



RetreatMigraine is a conference that gathers people living with migraine disease for education, advocacy training, and support. This year it will be a hybrid event held from October 15-17, 2021 with the in-person portion at the Sonesta Redondo Beach & Marina. Our in-person event is currently sold out, but cancellations are unfortunately inevitable due to the nature of our population. You can add your name to our waitlist and we will offer spots as they become available.

Registration for the virtual event is open June 3rd and shipped welcome boxes including select products donated by supporters with virtual registration will be available on a first-come, first-served basis. For more information, visit https://headachemigraine.org/retreatmigraine/.

If you have any questions, please contact the RetreatMigraine planning committee at retreatmigraine@headachemigraine.org.

11 May 2021

SUNCT/SUNA & Trigeminal Neuralgia Town Hall

 


We’re sharing with you an opportunity to learn more about some less common headache types. The Coalition for Headache and Migraine Patients (CHAMP) is collaborating with Praxis Precision Medicines, a clinical-stage biopharmaceutical company, to host a series of virtual Town Halls on SUNCT/SUNA and Trigeminal Neuralgia.

Short-lasting unilateral neuralgiform headache attacks (SUNCT)At least once a day, attacks of mild to serious, purely unilateral head pain lasting seconds to minutes and are typically accompanied by pronounced lacrimation and redness of the ipsilateral eye.

Short-lasting unilateral neuralgiform headache attacks with cranial autonomic symptoms (SUNA) - Attacks fulfilling the criteria for SUNCT with only one or neither conjunctival injection and lacrimation (tearing).

During the town hall, Praxis will share its research in the rare headache and pain space. It is currently in the early stages of developing medicine for SUNCT/SUNA and Trigeminal Neuralgia. 

Due to the relatively small number of SUNCT/SUNA and TN patients, these Town Halls are unique events to learn directly from individuals with these conditions.

Virtual Town Hall: May 25 at 6pm ET


Register: https://tinyurl.com/yvv479je


21 April 2021

Join The Diva Squad for Miles for Migraine - Hartford 2021


Hi Guys!

I just wanted to take a moment to tell you about an organization that’s very special to me.

Miles for Migraine is a nonprofit whose mission is to improve the lives of people with migraine and their families.

They raise awareness about headache disorders and raise funds to help find a cure for migraine.

I’m going to be supporting them by participating in an upcoming Walk, Run, Relax event where I’ll be committing to some form of intentional movement, whether it is walking, stretching, hiking, or gentle yoga.

This year, as in past years, I am raising awareness for migraine because I and millions of other Americans live with migraine disease and Miles for Migraine is the one singular organization that allows migraine patients to show up in any way they can to support migraine research, fellowships, and awareness.

Anyone want to join my team and help advocate for those who experience migraine? We are The Diva Squad and we are participating in the event, Miles for Migraine - Hartford 2021.

I hope to "see" you there! The virtual event runs from April 28 through May 6. Remember that any intentional movement or relaxation activity counts!

Be sure to dress up in your best purple flair and post to social media for another chance at a fun prize!

As always, thanks for your support. 💜



20 April 2021

#Sponsored: Mothers: A Conversation About Migraine - Part 2

Mothers: A Conversation About Migraine – Part 2



This is a continuation of my first blog post about my migraine interview with Khloè 

The Migraine Thief 

What Khloè described to me that day about losing time in her life is very true. We should not be taken away from our lives because of something we didn’t ask to have. I call my migraine a thief because, like Khloè said, it steals time away from our families, friends, and our goals. Between the time it steals from our businesses to the things we're trying to achieve on a daily basis, it's hard to show up in the way that we want to every day. Migraine can be so unpredictable – I feel like when you live with migraine, it's almost like it's lurking around the corner waiting to jump in and ruin your day. 

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