BIRMINGHAM: The First Annual Meeting of SBSM (The Society of Behavioral Sleep Medicine)
2019-09-12 - 2019-09-15 | Renaissance Birmingham Ross Bridge Resort & Spa, 4000 Grand Ave, Birmingham, AL, 35226, United States
Note: This is not a patient event. Read on to learn why HF is participating in this important meeting!
The Hypersomnia Foundation has accepted an invitation to work with SBSM in the preparation of an educational program on idiopathic hypersomnia. Dr. Lynn Marie Trotti, chair of HF’s Medical Advisory Board, will provide two lectures, and HF Board Member Sarah Beazley will present and facilitate a patient impact panel to help attendees understand the life-changing symptoms of IH.

VANCOUVER, BC: WUN-HF Education Day
2019-09-21 08:30 - 16:30 (America/Los_Angeles) | Vancouver Convention Centre, Vancouver, B.C., Canada, 999 Canada Pl, Vancouver, British Columbia, V6C 3C1, Canada
Understanding Narcolepsy and Hypersomnia: Insights and Perspectives
This free event is open to everyone!
HF is collaborating with Wake Up Narcolepsy to hold an Education Day on Saturday, September 21st in Vancouver, B.C. at Sleep Expo 2019:
This one day conference is for people with narcolepsy and/or idiopathic hypersomnia, their families, educators, clinicians and researchers. Leading experts will be sharing their latest research on treatment options, impact of narcolepsy and idiopathic hypersomnia, comorbidity and how to live a full life with narcolepsy and hypersomnia.
This special Education Day is in collaboration with the Hypersomnia Foundation and World Sleep. This will offer a unique opportunity for people with narcolepsy and/or idiopathic hypersomnia to mix and mingle with sleep doctors, clinicians and researchers from World Sleep 2019. It takes place during the first-ever Sleep Expo through World Sleep 2019, a full scientific congress on sleep medicine and research.
Presentations from Dr. Thomas Scammell, Dr. Brian Murray, Dr. Yves Dauvilliers, Kelsey Biddle, Dr. Indra Narang, and Shelly Weiss will address pertinent sleep disorder issues including mental health, transitional care, lifestyle, current research and treatment. There will also be special breakout panel discussions focusing on narcolepsy and idiopathic hypersomnia.
By registering for Wake Up Narcolepsy Education Day at Sleep Expo 2019, you will ALSO have access to Sunday, September 22, 2019 Sleep Expo Program– including Public Lecture Series, Facilitator-Led Discussion, and Sleep-Related Author Tables.
Registration is free – click on this link and scroll all the way to the bottom to find the ORANGE “Register” button: https://www.wakeupnarcolepsy.org/education-day/

PHILADELPHIA: AAFP (American Association of Family Physicians) Family Medicine Experience (FMX) 2019
2019-09-24 - 2019-09-27 | Pennsylvania Convention Center, Philadelphia, PA, 1101 Arch St, Philadelphia, PA, 19107
Note: This is not a patient event. Read on to learn why HF is participating in this important meeting!
As part of HF’s new 2019 initiative, we are reaching out to the professionals who are most likely to encounter sleepy people! At this conference, HF will exhibit and network among 5,000 family medicine physicians in order to raise awareness of IH and provide education about rare sleep disorders to medical professionals who are most likely to encounter sleepy patients first. Most medical schools provide only 3 hours – on average – of instruction about sleep, and HF wants to encourage family physicians to consider the possibility of a sleep disorder when diagnosing a sleepy (or fatigued) patient.

CHICAGO: HF Educational Meeting
2019-10-19 10:00 - 15:00 (America/Los_Angeles) | Sheraton Suites, Chicago O’Hare, 6501 Mannheim Road, Rosemont, IL, 60018, United States
The Hypersomnia Foundation is holding a Patient Education Meeting on Saturday, October 19th in Chicago at the Sheraton Suites O’Hare Hotel, from 10:00 a.m. – 3:00 p.m. Tickets are $25 and includes a buffet lunch.
Registered event attendees are invited to attend a free Meet & Greet socializing hour planned for Friday, October 18 at 5:30 p.m. at the venue hotel.
There are a limited block of rooms at the Sheraton Suites O’Hare Hotel at the rate of $115/night. This rate will be available both Friday, October 18th and Saturday, October 19th.
Scheduled speakers include:
Dr. David B. Rye of Emory University will participate in a Q&A session on Hypersomnolence Sleep Disorders: IH, narcolepsy and Kleine-Levin; moderated by Hypersomnia Foundation Board member Betsy Ashcraft.
Dr. Thien Thanh Dang-Vu of the Concordia University (Montreal) will present his recently published study: Beyond Sleepy: Structural and Functional Changes of the Default-Mode Network in Idiopathic Hypersomnia.
Dr. David Plante of the University of Wisconsin will discuss his recently published study Hypersomnolence and Depression.
Sarah Beazley, Hypersomnia Foundation Board Member, patient advocate and former nurse, will hold an interactive workshop on Effective Self-Advocacy: Getting Your Best Care for people with IH and related sleep disorders.
Amy Desmarais, Hypersomnia Foundation Board Member, will share her personal story: The Journey of Living with a Rare Sleep Disorder.
Rebecca King, Hypersomnia Foundation’s new Legislative Advocate and Board member, will share her advocacy efforts in Washington, D.C. and at the National Institute of Health in Bethesda, where she has worked for increased funding for sleep disorder research.

This event will be similar to our Seattle Education Meeting, which was held in June.

ATLANTA: The Southern Sleep Society 42nd Annual Meeting
2020-03-26 - 2020-03-29 | Renaissance Waverly Hotel and Convention Center, 2450 Galleria Pkwy, Atlanta, GA, 30339, United States
Note: This is not a patient event. Read on to learn why HF is participating in this important meeting!
HF is participating in this event and providing a patient panel on Friday, March 27, 4:00 PM – 5: 30 PM, titled Patient & Physician Stories & Perspectives in an Era of Novel Treatment Modalities. HF’s Scientific Advisory Board Chair, Dr. David Rye, will moderate, and PAAC member Diana Kimmel will be one of three the patients on the panel. Current board member, Sarah Beazley, and retired/founding board member Cat Rye, will also host an HF display table.

PHILADELPHIA: HF Conference
2020-06-13 - 2020-06-14 | Le Méridien Philadelphia, 1421 Arch Street, Philadelphia, PA, 19102, United States
The Hypersomnia Foundation has CANCELLED our June 2020 Conference.
Due to the COVID-19 restrictions and concern for the healthand safety of our community, the Hypersomnia Foundation is canceling our June 2020 Conference in Philadelphia.
While there is no doubt this is the right decision, and many have lost much more to this pandemic, it’s still difficult to give up one of the few opportunities in our community to meet in person. So many people with IH, narcolepsy and KLS routinely live in a state of lock-down because of their disorder. Talking about those experiences with one another is rare itself, and hearing directly from the dedicated researchers and physicians who have made rare sleep disorders the focus of their work is inspiring. We’ll hope for better days when we can meet again.
In the meantime, we extend our heartfelt wishes to everyone in the rare sleep disorder community, for your safety and well-being, and we thank you for your support of the Hypersomnia Foundation.
If you purchased tickets to the conference, refunds will be processed through EventBrite in the next 48 hours.
If you have made reservations through our room block at our hotel venue, Le Meridien, cancellations can be made by calling Marriott’s central reservation line at (888) 236-2427 as the Le Meridien hotel itself is closed.
If you have questions, please contact our Executive Director, Stephanie Wells at stephanie@hypersomniafoundation.org

PHILADELPHIA: APSS SLEEP2020 (a conference for sleep medicine professionals)
2020-08-27 - 2020-08-30
Note: If you are looking for info on HF’s conference in June 2020 for people with idiopathic hypersomnia, narcolepsy & KLS and their supporters (friends, families, and significant others!), please click here: Beyond Sleepy in Philadelphia
The following event is primarily for sleep medicine professionals. HF will attend as part of our mission to raise awareness and advocate for more research and better treatments. Due to the COVID-19 pandemic, this meeting will be virtual.
From the website: https://www.sleepmeeting.org/about/:
SLEEP is the annual meeting of the Associated Professional Sleep Societies, LLC (APSS), which is a joint venture of the American Academy of Sleep Medicine (AASM) and the Sleep Research Society (SRS).
The SLEEP meeting provides evidence-based education to advance the science and clinical practice of sleep medicine, disseminates cutting-edge sleep and circadian research, promotes the translation of basic science into clinical practice, and fosters the future of the field by providing career development opportunities at all levels. There is simply no other gathering of sleep professionals anywhere of this scale. The conference is attended by thousands of individuals from all around the world, all connected by their interest and/or expertise in sleep medicine. Many of these attendees are pioneering leaders in the field. If you are looking to network, you must attend SLEEP.

BERLIN/VIRTUAL: EU-NN's European Narcolepsy Day 2020
2020-09-05
This event is open to both patients and sleep medicine professionals. Due to the COVID-19 pandemic, this meeting will be virtual.
Get the program, keeping in mind that Berlin is in the Central European Time zone. However, the events will be uploaded afterward and available on demand.
Register by August 31, 2020.

VIRTUAL: American School Health Association 2020 Conference
2020-09-30 - 2020-10-01
As part of our mission to raise awareness about IH and related disorders, HF will be attending the American School Health Association’s 2020 virtual conference, where our Medical Advisory Board chair, Dr. Lynn Marie Trotti, will discuss Sleepy Students and Idiopathic Hypersomnia. Greater awareness of IH by school health professionals means a greater chance that students with sleep disorders will get an early (and correct) diagnosis!

VIRTUAL: Society of Anesthesia and Sleep Medicine 10th Annual Meeting
2020-10-01 - 2020-10-02
FREE VIRTUAL CONFERENCE!
The Society of Anesthesia and Sleep Medicine’s (SASM) 10th Annual Meeting is October 1-2, 2020. This year’s theme is “Innovation & Synergism in Sleep, Perioperative Care & Chronic Pain: The Future is Here” and will feature a keynote address from Dr. Jerome Adams, MD, U.S. Surgeon General.
Note: If you can’t attend during the actual conference, your registration will allow you to log in and access presentations/etc. for a number of weeks after the conference.
Sessions scheduled during this two-day virtual event include:
• Sleep and Anesthesia during the COVID-19 Pandemic
• The Role of Gender on Sleep and Pain
• The Future of Research and Research Funding in Sleep Medicine
• Cannabinoids for Pain and Sleep
As part of HF’s mission to raise awareness and advocate for more research and better treatments, HF representatives will attend and present their stories, followed by a brief Q&A. The session is entitled “Patient Perspectives: Living with Idiopathic Hypersomnia” and is scheduled for October 1.
For more details, including the program, CLICK HERE.
REGISTER for this FREE event TODAY!
*****Helpful Information for Registering as a Patient*****

On the registration form, under the “Specialty” section, you can check “Other” and then in the pop-up box, you can write “Patient” or “HF Constituent” or both.
This event is FREE for the HF community to attend, but there is no “Free” option on the registration form. Therefore, ignore “Payment Type” and click “SUBMIT”.
When you get to the payment section, DO NOT PAY! This event is free for patients, family members, interested parties, and caregivers. Click on “Add Another Participant” then exit out of the page. It has been confirmed by SASM that you will be registered. We have also been told there are no automated registered emails being sent out but a Zoom invitation from SASM will be sent closer to the event.

If you have questions or concerns, please contact stephanie@hypersomniafoundation.org to help walk you through the registration process.

VIRTUAL: HF's The Research Continues
2020-10-24 13:00 - 14:30 (America/New_York)
The COVID-19 pandemic has left many in the hypersomnia community wondering about the status of clinical trials and research studies—how have they been affected by the lockdowns and safety advisories? Find out the latest answers!
Join us on October 24 for a FREE, interactive, 90-minute virtual program, during which hypersomnia experts from both the research and the pharmaceutical sides will update us on where their research studies and clinical trials stand. You will not want to miss this virtual event!
Sessions will include:

HF Research Award Recipient Dr. Caroline Maness will provide an update on her research “Cytokine Profiles in the Central Disorders of Hypersomnolence” and participate in a live Q&A with our viewers. Cytokines are known for their role in inflammatory responses, and recently have been discovered to play a role in sleep, sleepiness, and fatigue. Dr. Maness’ study aimed to further clarify the cytokine profiles of patients with sleep apnea, narcolepsy type 1, narcolepsy type 2, and idiopathic hypersomnia, as well as people who are clinically sleepy but do not fit into one of these diagnostic categories. Cytokine profiles for these groups, as well as a group of healthy controls, were compared along with sleep study data and survey data that measured levels of depression, sleepiness, and fatigue. With better understanding of the cytokine mixture in the various disorders of hypersomnolence, the hope is that cytokines can be used as a future therapeutic target for symptom control.
HF Research Award Recipient Dr. Todd Bishop, will provide an update on his research on IH within the U.S. Veterans Health Administration and participate in a live Q&A with our viewers. He will 1) provide an update on efforts to develop and validate a case ascertainment algorithm that will be used to accurately identify cases of idiopathic hypersomnia within large electronic medical records and 2) describe plans for pending analyses regarding IH in the Veteran population.
Christina Brundage, Hypersomnia Foundation Volunteer and IH Patient Advocate will share her personal experiences in “Christina’s Story: Volunteering for IH Clinical Trials”.
Dr. Marisa Whalen, Associate Director, Medical Affairs at Jazz Pharmaceuticals will provide updates on research studies in “Unlocking Pharmaceutical Discoveries: Developing Meaningful Treatments that Address Patient Needs”.

You will not want to miss this virtual event!
Register today!

VIRTUAL: Your Best Self—New Ways of Thinking About Disability & Support
2021-01-30 13:00 - 14:30 (America/New_York)
Join us on January 30 for a FREE, interactive, 90-minute virtual program, during which you will learn about the emotional aspects of disability and how to choose the right support group for you—or even start your own. You will not want to miss this virtual event!
Sessions will include discussions with:

Anjel Burgess, Esq, of Burgess & Christensen in Atlanta. She is a prominent disability attorney and HF Board member, who has represented numerous people with IH and related disorders who are applying for disability. Many people have an emotional reaction to the word “disability” and for people with a sleep disorder, the term can be especially confusing. Am I disabled? What does this mean for me? Anjel will share her observations of the emotional aspects of that journey, and how to manage those hurdles. Whether or not you expect to apply for disability benefits, you won’t want to miss this important discussion!

Diana Kimmel of the Hypersomnia Alliance. She is a well-known (and extraordinary) patient advocate in the hypersomnia community. Diana co-organizes the popular “Snooze Cruise” retreats, and facilitates a support group in Atlanta. Are you wondering if there are others out there who are looking for a support group? How do you find them, what makes a successful support group—should you try to start one yourself? Diana will share what makes a support group successful, and the nuts and bolts of organizing virtual and in-person groups.

You will not want to miss this virtual event!
Register today!

VIRTUAL MEET & GREET: "I’m Newly Diagnosed - What Does This Mean?"
2021-05-01 13:00 - 14:30 (America/New_York)
Introducing the Hypersomnia Foundation’s new “MEET & GREET” series – interactive meetings with members of our community, to give us a chance to talk informally, and let community members meet one another!
The first meeting in the series, “I’m Newly Diagnosed – What Does This Mean?” is scheduled for May 1 at 1:00 p.m. Eastern/10:00 a.m. Pacific. If you have been diagnosed within the last year with IH or a related sleep disorder, you won’t want to miss this event. Space is limited, so register today!
Join us via Zoom with cameras on, for a lively, short discussion about the resources and organizations that are available to help; then we’ll divide into small groups in breakout rooms to chat. When you have a rare disorder, just being in a room – even a virtual room – with others who know exactly what you’re dealing with can be encouraging.
The meeting will be hosted by Sarah Beazley & Diane Powell of the Hypersomnia Foundation and Diana Kimmel of the Hypersomnia Alliance.
THANK YOU to our Sponsors for this MEET & GREET event:

Avadel Pharmaceuticals
Harmony Biosciences
Jazz Pharmaceuticals
Takeda Pharmaceutical Company

Together we will get #BeyondSleepy!

VIRTUAL: Diagnosing Hypersomnia Differently—A European Proposal
2021-05-11 12:00 - 13:30 (America/New_York)
Join us on May 11 at noon (Eastern) for a FREE virtual event: Diagnosing Hypersomnia Differently—A European Proposal.
Did you know? Sleep researchers around the world are working hard to improve our understanding of hypersomnias and developing new methods of diagnosis and treatment.
We’ve invited Dr. Gert Jan Lammers of Leiden University in the Netherlands to share with us a recent proposal for changing the diagnosis and categorization of both narcolepsy and idiopathic hypersomnia.
The backstory: A group of prominent sleep specialists in Europe became interested in this topic because many of their patients had credible complaints of hypersomnolence but didn’t meet current diagnostic criteria. Convinced that their patients’ complaints were real and that they deserved to receive a diagnosis and treatment, the researchers set out to promote the use of extended sleep studies and propose establishing three new diagnostic categories:

narcolepsy,
idiopathic hypersomnia, and
idiopathic excessive sleepiness.

Each diagnosis category has two possible levels of certainty, either “certain” or “probable,” depending on which tests are used for diagnosis and the levels of key measurements in each test.
Some European researchers are already using the proposed diagnostic criteria to evaluate their patients and to define patient samples in research studies. A new European proposal for treatment guidelines is also based on the new diagnostic categories. (An official update to the International Classification of Sleep Disorders probably won’t happen for another few years.)
Please join the Hypersomnia Foundation and Dr. Lammers to learn more about these efforts in Europe and the possible implications for both clinical treatments and research in the U.S.

VIRTUAL: APSS SLEEP 2021 (a conference for sleep medicine professionals)
2021-06-12 - 2021-06-16
The following event is primarily for sleep medicine professionals. HF will attend as part of our mission to raise awareness and advocate for more research and better treatments.
From the website https://www.sleepmeeting.org/about/:
SLEEP is the annual meeting of the Associated Professional Sleep Societies, LLC (APSS), which is a joint venture of the American Academy of Sleep Medicine (AASM) and the Sleep Research Society (SRS).
The SLEEP meeting provides evidence-based education to advance the science and clinical practice of sleep medicine, disseminates cutting-edge sleep and circadian research, promotes the translation of basic science into clinical practice, and fosters the future of the field by providing career development opportunities at all levels. There is simply no other gathering of sleep professionals anywhere of this scale. The conference is attended by thousands of individuals from all around the world, all connected by their interest and/or expertise in sleep medicine. Many of these attendees are pioneering leaders in the field. If you are looking to network, you must attend SLEEP.

VIRTUAL - Sleep/Wake Cyclers Ride for Research 2021
2021-06-12
The Hypersomnia Foundation community is forming a bike team, the Sleep/Wake Cyclers, to raise money for research on idiopathic hypersomnia and related sleep disorders. Our inaugural ride will be Saturday, June 12, 2021.
All ages and abilities are welcome. Whether your ride two miles or 200, ride on a bike trail, around your neighborhood, on a stationary bike in your living room, or across the country on your Harley, anyone who wants to help us raise money for hypersomnia research is welcome to join our virtual team and raise $20,000 for research.
Email Rebecca@hypersomniafoundation.org if you are interested in joining our Sleep/Wake Cyclers team and learn more about the ride HERE.
Riders and supporters, join us now and Ride for Research!

VIRTUAL MEET & GREET – "Self Advocacy: Getting Your Best Care"
2021-06-17 19:00 - 20:30 (America/New_York)
Join us on Thursday, June 17 at 7:00 p.m. (Eastern) for our VIRTUAL MEET & GREET – “Self-Advocacy: Getting Your Best Care.” Turn your cameras on as we talk about the challenges of advocating for timely and quality care for idiopathic hypersomnia, narcolepsy and Kleine-Levin syndrome.
Following a short panel presentation, we’ll break into chat rooms to talk about this issue together. Co-hosted by Hypersomnia Alliance Co-Founder Diana Kimmel and HF Board Members Sarah Beazley and Veronica Moore. Space is limited, so sign up soon!

VIRTUAL – Your Best Self: Getting Your Meds!
2021-06-24 12:00 - 13:30 (America/New_York)
Join us Thursday, June 24, 2021 at 12:00-1:30 p.m. (Eastern) for our FREE virtual event “Your Best Self: Getting Your Meds!”- Reducing out of pocket cost for prescription medications and appealing insurance denials.
In an ideal world, your doctor gives you a prescription for a medication, the pharmacy fills it promptly, and insurance covers all or most of the cost. Unfortunately, many people with IH or related sleep disorders regularly experience breakdowns in this process. What if the out-of-pocket costs are very high? What if the insurer denies coverage altogether? What if you don’t have insurance in the first place? For this webinar, we’ve invited two speakers who are experts in the field of drug access and affordability and insurance appeals to tell us about the programs and strategies that we can use when issues arise.
Speakers include:
CARLA DELLAPORTA — Carla is the Director of User Engagement at Needymeds, which is a non-profit organization that connects people to programs that will help them afford their medications and other healthcare costs. She will tell us about the many resources and links to programs that can be found on the Needymeds website. Needymeds has partnered with the Hypersomnia Foundation to develop an information page dedicated to idiopathic hypersomnia and with Wake Up Narcolepsy for a page on narcolepsy.
LAURIE TODD — Since winning her own insurance battle for lifesaving surgery in 2005, Laurie has gone on to write and fight 232 appeals for others – all different conditions, all different insurers, all over the country. Countless others have won their appeals using her latest book “APPROVED: Win Your Appeal in 5 Days.” Laurie will share her unique approach to making insurance companies pay their fair share.
Both of the presentations, including questions and answers from the audience, will be recorded and posted on the recently launched HF insurance web pages.

VIRTUAL: NIH NINDS Health Disparities and Inequities in Neurological Disorders Workshop
2021-09-22 - 2021-09-24
Registration is now open for the upcoming NIH NINDS HEADWAY Health Disparities and Inequities in Neurological Disorders Workshop. The event will be held virtually from September 22nd through 24th from 12-5 pm ET daily. A detailed agenda is available on the event website. This workshop is open to all, including patients, caregivers, advocates, researchers, healthcare providers, industry, etc.
NIH NINDS (The U.S. National Institutes of Health’s National Institute on Neurological Disorders and Stroke) “is committed to reducing the disproportionate burden of neurological disease borne by underserved groups of society, including race/ethnic, sex/gender minorities, rural, disabled and socioeconomically disadvantaged populations, by funding a spectrum of research from basic through implementation science, and training the next generation of health disparities investigators.
In 2020, the NINDS Office of Global Health and Health Disparities within the Division of Clinical Research, in collaboration with the Office of Science Policy and Planning, embarked on a strategic planning process to address health disparities and inequities in neurological disorders through research. As a culmination of the strategic planning process, NINDS is hosting a Health Disparities and Inequities in Neurological Disorders Workshop (HEADWAY).
The goal of the HEADWAY workshop is to identify evidence-based interventions that are feasible and widely scalable, to diminish disparities and inequities in neurological disorders. This workshop will assemble subject matter experts in various disciplines from clinical and health services researchers, to implementation and behavioral scientists, along with community stakeholders and patient advocates. Findings and recommendations from the workshop and strategic planning process will be placed on the NINDS website and used as resources for setting priorities and developing initiatives over the next 5 – 10 years.
Please email oghhd-headway@ninds.nih.gov with any related questions or comments.”

VIRTUAL: Society of Anesthesia and Sleep Medicine (SASM) 2021 Annual Meeting
2021-10-07 - 2021-10-08
The Society of Anesthesia and Sleep Medicine (SASM) 2021 Virtual Annual Meeting
“Sleep Health: The New Vital Sign”
Registration is now open for the SASM Annual Meeting on October 7-8, 2021. This free virtual conference is open to patients as well as healthcare providers. Presentations and discussions tentatively scheduled are:

Sleep Health and Why We Should Be Focusing on It in This Decade

Sleep and the Pandemic

Sleep Health: Health Care Workers

Postoperative Complications in Obstructive Sleep Apnea

Collaborative Guidelines on Postoperative Management of Patients with OSA

Healthcare providers can get CME for free, if they’re SASM members (small fee if they’re not members). Sessions will be recorded and available after the conference for all registrants. Register and view the full agenda at the SASM website.

VIRTUAL: Canadian Sleep Society (CSS) Conference 2021
2021-10-28 - 2021-10-30
For registration in French, click HERE.
The Canadian Sleep Society (CSS) is hosting a virtual conference. In addition to the main scientific program, it will also feature patient engagement sessions for the public, which will be fully accessible online for free. See the full details HERE.
Of particular interest to people with narcolepsy or idiopathic hypersomnia is the Narcolepsy/Hypersomnia Engagement Session on Friday, Oct. 29th:

English—2 PM to 2:55 PM ET with Dr. Jason Valerio
French—3 PM to 3:55 PM ET with Dr. Alex Desautels

Each session will feature a formal presentation regarding diagnosis, medication, disease course, tips and more followed by a 25 minutes Q&A session during which patients with narcolepsy and/or IH will be able to ask questions.

VIRTUAL - Reaching Every Patient: A Health Equity Conversation
2021-11-13 12:00 - 14:00 (America/New_York)
Reaching Every Patient: A Health Equity Conversation – An HF VIRTUAL Event
Saturday, November 13th 12noon-2pm (EST)
Let’s talk about how we can help everyone with a rare sleep disorder get a proper diagnosis and treatment! Many people with rare sleep disorders face diagnosis and treatment delays. Some don’t seem to get a diagnosis at all: we’ve noticed that many communities are vastly underrepresented in patient registries and clinical trials – why is this? What other barriers are there?
When everyone is diagnosed, our community not only grows, but becomes stronger in our advocacy to get more research and improved treatments!
So please join us to listen, learn and engage in this event. We’ll discuss a few areas of common interest for people with sleep disorders, share patient stories, resources, and talk about how we can all play a role in building a wider community.
Note: This event is open to attendees from any country.
More on this event:
HF’s Diversity and Health Equity Taskforce is inviting the IH, narcolepsy and KLS patient communities to join this important conversation.
We are aware that there are ongoing challenges when it comes to the inclusion of underrepresented, seldom heard or socially excluded groups. In order to ensure equity in healthcare, it is critical to elevate the perspectives of patients in underrepresented groups and learn from their experiences.
Prior knowledge of or experience in this area is not a requirement to participate, and allies are welcome! We hope to bring in many different perspectives from stakeholders focused on health equity, diversity, inclusion and allyship, and other relevant areas. We invite everyone to listen, learn, and participate in this engaging event. We hope you are available to participate and share your interest in this important topic!

VIRTUAL MEET & GREET - "We're in This Together!"
2022-01-15 13:00 - 14:30 (America/New_York)
Join us on Saturday, January 15, 2022 at 1:00-2:30 p.m. (Eastern) for our VIRTUAL MEET & GREET – “We’re in This Together!”
Is it a challenge for you (and your supporters) to manage life with a sleep disorder? You’re not alone! We invite people with IH, KLS, and narcolepsy AND their supporters to join in the discussion as we share experiences, paths to understanding these sleep disorders, and practical ideas for coping.
This 90-minute event will be led by community advocates:

Diana Kimmel from Hypersomnia Alliance
Christen Wernig from the Colorado Narcolepsy & IH Support Group
Diane Powell from the Hypersomnia Foundation
Michael Sparace from the Hypersomnia Foundation

and will feature a special guest, Dr. John Harsh, a psychologist certified in sleep medicine.
Space is limited, so sign-up soon!

ROME: World Sleep 2022 (a conference for sleep medicine professionals)
2022-03-11 - 2022-03-16
The following event is primarily for sleep medicine professionals. HF will attend as part of our mission to raise awareness and advocate for more research and better treatments.
Check out the keynote speakers HERE.

CHARLOTTE, NC - HF Conference
2022-06-03 - 2022-06-05 | Sheraton Le Meridien Charlotte Hotel Complex, 555 South McDowell Street, South Tower, Charlotte, NC, 28204, United States
Join us in Charlotte, North Carolina on June 3 – 5, 2022!
Join us in beautiful Charlotte for the Hypersomnia Foundation’s #BeyondSleepy Conference 2022 for people with idiopathic hypersomnia, narcolepsy, and Kleine-Levin Syndrome and their supporters. After such a long hiatus from meeting in person, we are planning a great mix of speakers covering the latest in research, treatments, and clinical trials; networking, discussion sessions, a pool-side evening reception, and more.
ALL MEALS AND BREAKS ARE INCLUDED IN THE LOW “EARLY BIRD” REGISTRATION PRICE OF $99.00. There is a limited block of rooms at the Sheraton Charlotte Hotel at the rate of $139/night for the duration of our conference. Reserve your room today!
The conference begins Friday, June 3rd at 5:00 p.m. EDT and ends at noon EDT on Sunday, June 5th. For those unable to attend, the general session presentations will be live-streamed online and through the downloadable Whova mobile app.

CHARLOTTE: APSS SLEEP 2022 (a conference for sleep medicine professionals)
2022-06-04 - 2022-06-08

CHARLOTTE, NC: Accredited Continuing Education Dinner Symposium
2022-06-05 18:30 - 20:30 (America/New_York) | The Westin Charlotte, 601 South College Street, Charlotte, NC, 28202, United States
NOTE: The intended audience for this CME/CE certified symposium is sleep specialists, psychiatrists, neurologists, and advanced-practice clinicians.
The Hypersomnia Foundation is partnering with Haymarket Medical Education on a complimentary accredited continuing education dinner symposium, “A New Dawn for Better Outcomes in Patients With Idiopathic Hypersomnia: New Data, New Guidance, New Treatments” being held on Sunday, June 5, 2022.
The symposium is being presented at the SLEEP 2022 conference in Charlotte, NC, so it’s a great opportunity to participate in this CME event while also attending the HF Conference and/or SLEEP 2022 conferences.
REGISTER HERE for this FREE event.
SYMPOSIUM DETAILS:
WHEN – Sunday, June 5, 2022 / 6:30-7:00 p.m. Registration and Dinner / 7:00-8:30 p.m. Scientific Session
WHERE – The Westin Charlotte, Providence Ballroom, Charlotte, NC
PROGRAM DESCRIPTION – This CME/CE-certified industry-supported event presented at SLEEP 2022, chaired by Russell Rosenberg, PhD, FAASM, and in association with the Hypersomnia Foundation, consists of a lively evidence-based panel discussion among faculty experts (Anne Marie Morse, DO, FAASM, and Lynn Marie Trotti, MD, MSc) and a person with idiopathic hypersomnia, who will provide insights into their personal experiences with this disorder.
INTENDED AUDIENCE – Sleep specialists, psychiatrists, neurologists, and advanced-practice clinicians.

Virtual: UNIGHT - Discuss. Share. Connect.
2023-01-30 19:00 - 20:30 (America/New_York)
UNIGHT – Discuss. Share. Connect.
Monday, January 30th at 7:00 p.m. (Eastern)
Join us on the last Monday of every month via Zoom at 7:00 PM (Eastern) / 4:00 PM (Pacific) for UNIGHT – a monthly virtual get together for people with sleep disorders, their family and friends to have an open, casual discussion about various topics related to living with a sleep disorder. UNIGHT is an opportunity to discuss, share, connect, and just be ourselves.
The first UNIGHT is Monday, January 30 with special guest Dr. Anne Marie Morse.

VIRTUAL: UNIGHT - Discuss. Share. Connect.
2023-02-20 19:00 - 20:30 (America/New_York)
UNIGHT – Discuss. Share. Connect.
Monday, February 20th at 7:00 p.m. (Eastern)
Join us every month via Zoom at 7:00 PM (Eastern) / 4:00 PM (Pacific) for UNIGHT – a monthly virtual get together for people with sleep disorders, their family and friends to have an open, casual discussion about various topics related to living with a sleep disorder. UNIGHT is an opportunity to discuss, share, connect, and just be ourselves.
This month’s UNIGHT is Monday, February 20th with special guest Dr. Lynn Marie Trotti.

VIRTUAL and IN-PERSON - Salt Lake City, UT - #BeyondSleepySatellite HF Conference
2023-03-04 08:00 - 17:00 (America/New_York)
The Hypersomnia Foundation is hosting a series of one-day hybrid conferences (in-person and virtual) throughout the United States in 2023. Our first #BeyondSleepySatellite hybrid event is March 4th from 10:00 a.m.-4:00 p.m. (MST) in Salt Lake City at the Sheraton Salt Lake City Hotel.
Registration for #BeyondSleepySatellite – Together in Salt Lake City is $25 for in-person attendees and FREE for virtual attendees.
AGENDA and SPEAKER BIOS
10:00-10:30 AM – Welcome, Introductions, and Icebreaker with Claire Wylds-Wright, HF CEO
10:30-11:15 AM – “Hypersomnia: Assessment and Management,” presented by Dr. Chris Hammond
Dr. Hammond is from the Ogden Clinic in Utah. He is dual board-certified in Neurology and Sleep Medicine whose professional interests include sleep disorders, such as sleep apnea and narcolepsy, multiple sclerosis, peripheral nerve diseases, and epilepsy. Dr. Hammond and his Sleep Lab are certified by the Accreditation Commission for Healthcare.
11:15 AM – 12:00 PM – “Idiopathic Hypersomnia and Social Security Disability: What You Need to Know,” presented by Anjel Burgess, JD
Anjel Burjess, JD is an attorney specializing in Social Security Disability Law for adults and children, Veterans Disability, and Guardianships. She is a member of the Hypersomnia Foundation Board of Directors and has been a featured speaker for several HF events, other organizations, support groups, and the local bar association.
12:00-1:00 PM – LUNCH
1:00-1:45 PM – “Game of Life,” presented by Rebecca King
Rebecca King has been diagnosed with idiopathic hypersomnia/narcolepsy type 2. She is a member of the Hypersomnia Foundation Board of Directors and currently serves as the Board Secretary. Her main focus is advocating for hypersomnia research, access and affordability of medical care and prescription medications, and increasing the understanding of hypersomnias.
1:45-2:30 PM – “Living with Idiopathic Hypersomnia,” presented by Amy Desmarais
Amy Desmarais is a long-time supporter of and volunteer for the Hypersomnia Foundation and currently serves as the organization’s Treasurer/Chief Financial Officer. She will talk about her experience of living with IH and successfully managing her professional, personal, and family life.
2:30-2:45 PM – BREAK
2:45-3:30 PM – Panel Discussion
3:30-4:00 PM – Recap and Closing Remarks, Claire Wylds-Wright, HF CEO
For those travelling to Salt Lake City, we have reserved a block of rooms at the Sheraton. Reserve your room today!
