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OUCH(UK) Organisation for the Understanding of Cluster Headache

IHS 18th Congress Vancouver

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#1 Thu, 07/09/2017 - 10:28
Val
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Joined: 21/03/2012 - 15:16

IHS 18th Congress Vancouver

Yet another first for OUCH (UK), we were invited to attend the first ever Global Patient Advocacy Summit at the 18th Congress of the International Headache Society and Trustee Scott Bruce is representing OUCH along with representatives of 48 other patient organisations from all over the world.  The IHS is an organisation of headache neurologists and health professionals and they produce the internationally recognised headache guide for health professionals.  This is the first time that patient advocate groups have been invited to attend the IHS congress, and represents recognition of the valuable part that the various groups play in supporting patients in finding diagnosis and treatment.

Full press release here:

First-Ever Global Patient Advocacy Summit Unites Headache Medicine Leaders to Identify Shared Goals for Patient Advocacy in Global Fight Against Migraine

SEPTEMBER 6, 2017, 00:00 PST: VANCOUVER, B.C. — For the first time in the history of headache medicine, the top representatives from 49 International Headache Society member groups will gather for a one-day summit to identify the most essential global goals for the field with an emphasis on patient support. The Global Patient Advocacy Summit (GPAS), held on Sept. 6, 2017, kicks off the four-day, 18th Congress of the International Headache Society, and represents a groundbreaking interdisciplinary effort between doctors, researchers, government agencies and patient advocates to design a blueprint to close gaps in headache diagnosis, research and treatment.

“Individuals living with migraine bear multiple burdens. Not only is their disease potentially debilitating, it’s also invisible, misunderstood and deprived of the necessary investment in research that’s proportional to its devastating scope,” said Dr. David Dodick, President of the International Headache Society and Co-Chair of the Congress. “Migraine is identified by the World Health Organization as the third most disabling medical illness on the planet. The Global Patient Advocacy Summit represents a focused, organic partnership between doctors, patients and public health organizations to rectify that inequity, and make progress in the field of headache medicine."

Through a series of panels and interorganizational sessions, the goal of the one-day summit is to identify opportunities for patient advocacy around the globe, and the avenues by which leading professional medical societies, patient advocacy groups, and industry leaders can help facilitate and support these efforts.

“There is a staggering 37 million people living with migraine in the United States alone. Many of those people have never had their symptoms taken seriously or even addressed by a headache specialist,” said Meghan Buzby, Executive Director of the American Migraine Foundation, a partner organization presenting at the summit. “The more resources we can dedicate to education and driving public awareness, the more effective we will be at giving millions of people the tools they desperately need to advocate for their health and overall well-being.”

In addition to patient advocacy, one of the key meeting initiatives is to identify mechanisms to expand and improve patient access to healthcare services and treatment. New research has led to the development of groundbreaking therapies that could change the lives of millions of migraine patients around the world. Still, even in developed countries, migraine and headache research lacks access to publicly available research dollars. The massive and disproportionate lack of funding, relative to the disease's prevalence and its overall economic burden, has resulted in a glacial pace of treatment advances—a problem the summit attendees pledge to overcome in time.

The Global Patient Advocacy Summit represents a robust commitment to headache medicine and a uniform approach to a patient-centric offensive against the disabling disease. Elevating the profile of migraine, educating patients on advocacy opportunities, strategizing solutions to overcome barriers to treatment  and organizing awareness campaigns for employers, governments and the general public are key agenda items the summit will address.

At the conclusion of the one-day event, participants will collaboratively generate a white paper and a strategic blueprint for migraine patient advocacy that will be published in Cephalalgia, the International Headache Society’s medical journal.

Participating organizations include the World Health Organization, the U.S. Food and Drug Administration, various nonprofit organizations such as the American Migraine Foundation, American Academy of Neurology and other leading patient advocacy groups and national medical agencies from around the globe.

About the International Headache Society:

The International Headache Society is the world’s leading membership organization for all whose professional commitment, whatever their discipline, is to helping people whose lives are affected by headache. As a charity, the purpose of IHS is to advance headache science, education, and management, and promote headache awareness worldwide. Activities include publication of Cephalalgia, the biennial International Headache Congress, developing guidelines, the international headache classification, educating the next generation of headache specialists worldwide, online education materials and offering grants and fellowships to young physicians worldwide. For more information about the IHS, visit their website: http://www.ihs-headache.org

About Migraine/Headache:

Migraine is the third most prevalent and sixth most disabling medical illness in the world. Despite the more than 1 billion people affected by migraine around the globe, it is vastly underrecognized and undertreated, and there remains tremendous disparity in patient access to education, healthcare services, and drug, device, and non-pharmacological treatments.  Individuals who experience migraine have symptoms that include nausea, sensitivity to light and/or odors, skin sensitivity, fatigue, mood change, dizziness, difficulty concentrating, neck pain and changes in vision, including seeing spots, stars, lines, flashing lights and zigzag lines. The risk of other serious diseases is significantly higher in those with migraine, including stroke, epilepsy, depression, anxiety and chronic pain. Despite this, only one of every three people talk with a doctor about their migraine attacks and of those, only half get the right diagnosis. There is also a massive shortage of specialists focusing on migraine, with one specialist for every 65,000 individuals living with migraine, which worsens the problem.

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Tue, 12/09/2017 - 09:28
Val
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Last seen: 7 hours 11 min ago
Joined: 21/03/2012 - 15:16

Hi all

Trustee Scott Bruce has returned from Vancouver and says as follows:

"

As the international headache summit draws to a close. I get to reflect over a coffee over what has been an amazing experience.

#IHC2017 has brought so many highs. With an overidding message of hope.

For #CH I found the neurologists at all levels from Trainees through to the Professors all keen to learn about CH and to help those that sufferer get their pain under control. Research both in the pursuit of better medications in the form of CGRP more technology to provide hope and relief. Research into the impact and burden of headache on society. And the young researchers focusing on pre-attack indicators.

As a Patient I am humbled to see people taking CH so seriously.

As a Charity and a representative of OUCH I attended the first world Patient Summit and hopefully a new global movement will be born from that work on day one. I made sure that in a room dominated by Migraine, that the discussion also involved cluster headache.

We shared good practice and information.

I was also offered the opportunity to talk about clusters for the world migraine summit. I hope my ramblings make for good viewing when the piece is released.

This week I spent a huge amount of time working to raise the profile of cluster headaches and OUCH I was humbled to find that OUCH was well known the world over and respected for what we do. I had great talks with patient advocates and neurologists a like.

Personally I managed to catch up with colleagues from representative nations renewing those friendships and of course making new friends with patient advocates from so many countries in Europe America and Latin America and beyond.

Hope, was the overriding message to take home. The next studies and trials will make a huge difference to our community.

Signing off from Vancouver.

Scott

 

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