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October 2020

Bristol Myers Squibb’s The MS Mindshift Event Series

October 29, 2020 @ 7:00 pm - 8:00 pm

The MS MindShift initiative offers free educational online events that focus on helping people who live with multiple sclerosis (MS) better understand the critical role that healthy choices can have on the disease. A presentation from Karen Blitz-Shabbir, DO, NYP Brooklyn Methodist on the impact that healthy lifestyle choices can have on MS Personal journey shared by patient ambassador Nina Wellness topic: Art, presented by Anna Cunningham Click “REGISTER” to sign up. If you prefer to register over the phone, simply call 855-717-3222.…

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Intercept Pharmaceuticals’ Learn About Primary Biliary Cholangitis Webinar

October 29, 2020 @ 7:00 pm - 8:00 pm

Learn About Primary Biliary Cholangitis Join us for an online event about primary biliary cholangitis (PBC). Don't miss out on a live Q&A session with a Nurse Educator* and an inspiring story from a Patient Ambassador* who will share their journey with a treatment option used in conjunction with ursodeoxycholic acid (UDCA). To register for this event, click here. *PBC Ambassador and Nurse Educator are being compensated by Intercept Pharmaceuticals, Inc. Acknowledgment: This event post is sponsored by Intercept Pharmaceuticals…

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November 2020

Alexion Pharmaceuticals’ Unmask HPP Webinar Educational Event

November 5, 2020 @ 6:00 pm - 7:00 pm

Unmask HPP Webinar Educational Event November 5th, 2020 at 6pm ET  Listen to a physician and a patient or caregiver discuss topics about hypophosphatasia (HPP) and a possible treatment option. Ask questions & gather information to discuss with your doctor.   To register for this Webinar Educational Event, click here. Alexion is a trademark of Alexion Pharmaceuticals, Inc. Alexion is registered with the United States Patent & Trademark Office, as well as in other countries. Copyright © 2020, Alexion Pharmaceuticals,…

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Bristol Myers Squibb’s The MS Mindshift Event Series

November 5, 2020 @ 7:00 pm - 8:00 pm

The MS MindShift initiative offers free educational online events that focus on helping people who live with multiple sclerosis (MS) better understand the critical role that healthy choices can have on the disease. A presentation from Annette Okai, MD, MS Treatment Center of Dallas on the impact that healthy lifestyle choices can have on MS Personal journey shared by patient ambassador Jasmin Wellness topic: Communication strategies, presented by Meghan Beier, PhD Click “REGISTER” to sign up. If you prefer to register over…

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The Ehlers-Danlos Society’s European Learning Conference

November 7, 2020 - November 8, 2020
Hotel Mercure Paris Orly Rungis, 20 Avenue Charles Lindbergh, 94656 Rungis
Paris, France
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€75

The Ehlers Danlos Society's European Learning Conference November 7-8, 2020 This event will feature presentations from world-renowned experts on Ehlers-Danlos syndrome and related conditions, including the latest in research and treatment. November 7th is Health Professionals Day and November 8th is Community Day.   For registration and more info, click here.    

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United Therapeutics’ PAH Today National Broadcast

November 7, 2020 @ 2:00 pm - 3:00 pm

The PAH Today National Broadcast "The Pathways to Treatment" Saturday, November 7th, 2020 This online webinar event will be a critical chance for pulmonary arterial hypertension (PAH) caregivers and patients from around the country to hear about the latest developments related to the treatment of PAH. The broadcast will feature Dr. Lana Melendres-Groves and Dr. Sean M. Studer, who are recognized nationwide for their experience in treating PAH. To register for this event, click here. 2:00-3:00 ET; 12:00-1:00 MST

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CureDuchenne Cares Session: Raleigh, NC

November 7, 2020 @ 6:30 pm - 8:30 pm
Fleming’s Prime Steakhouse & Wine Bar- Raleigh, 4325 Glenwood Ave Suite 5004
Raleigh, NC 27612 United States
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CureDuchenne's Cares Sessions: Helping Connect and Inform Patient Families November 7th, 2020, 6:30 pm The Sessions program from CureDuchenne is geared specifically towards patients and their families as well as caregivers. These casual, two hour events can help inform patients about the latest in standards of care and other important information related to Duchenne muscular dystrophy. These events are completely free to members of the Duchenne community. Register here.

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Bristol Myers Squibb’s The MS Mindshift Event Series

November 10, 2020 @ 3:00 pm - 4:00 pm

The MS MindShift initiative offers free educational online events that focus on helping people who live with multiple sclerosis (MS) better understand the critical role that healthy choices can have on the disease. A presentation from Jacqueline Nicholas, MD, Ohio Health MS Center on the impact that healthy lifestyle choices can have on MS Personal journey shared by patient ambassador Jasmin Wellness topic: Adaptive movement, presented by Mindy Eisenberg Click “REGISTER” to sign up. If you prefer to register over the phone,…

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Bristol Myers Squibb’s The MS Mindshift Event Series

November 12, 2020 @ 3:00 pm - 4:00 pm

The MS MindShift initiative offers free educational online events that focus on helping people who live with multiple sclerosis (MS) better understand the critical role that healthy choices can have on the disease. A presentation from Mary Bailey, MD, Mandell Comprehensive MS Center on the impact that healthy lifestyle choices can have on MS Personal journey shared by patient ambassador Melissa Wellness topic: Nutrition, presented by Mona Bostick, RDN, LDN Click “REGISTER” to sign up. If you prefer to register over the…

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United Therapeutics’ PAH Today National Broadcast

November 14, 2020 @ 2:00 pm - 3:00 pm

The PAH Today National Broadcast "Moving Forward" Saturday, November 14th, 2020 This online webinar event will be a critical chance for pulmonary arterial hypertension (PAH) caregivers and patients from around the country to hear about the latest developments related to the treatment of PAH. The broadcast will feature Dr. Lana Melendres-Groves and PAH patient ambassadors Denise B. and Lauren J. To register for this event, click here.

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Bristol Myers Squibb’s The MS Mindshift Event Series

November 18, 2020 @ 3:00 pm - 4:00 pm

The MS MindShift initiative offers free educational online events that focus on helping people who live with multiple sclerosis (MS) better understand the critical role that healthy choices can have on the disease. A presentation from Tom Leist, MD, Comprehensive Multiple Sclerosis Center on the impact that healthy lifestyle choices can have on MS Personal journey shared by patient ambassador Nathan Wellness topic: Strength training, presented by Maria Moldavskiy, ES Click “REGISTER” to sign up. If you prefer to register over the…

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Alexion Pharmaceuticals’ Unmask HPP Webinar Educational Event

November 18, 2020 @ 6:00 pm - 7:00 pm

Unmask HPP Webinar Educational Event November 18th, 2020 at 6pm ET  Listen to a physician and a patient or caregiver discuss topics about hypophosphatasia (HPP) and a possible treatment option. Ask questions & gather information to discuss with your doctor.   To register for this Webinar Educational Event, click here. Alexion is a trademark of Alexion Pharmaceuticals, Inc. Alexion is registered with the United States Patent & Trademark Office, as well as in other countries. Copyright © 2020, Alexion Pharmaceuticals,…

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Cambridge Rare Disease Network’s RAREfest20

November 28, 2020

The Cambridge Rare Disease Network presents RARE Fest 2020 Engage.Educate.Empower. November 28, 2020 In light of the COVID-19 pandemic, RAREfest20 will be celebrated as a live virtual festival that will allow participants to listen to the latest information from experts, meet other members of the rare disease community, and observe fascinating demonstrations of the latest medical technology. The event will also feature the latest in art and film related to rare diseases. This event will be free to attend and…

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December 2020

Alexion Pharmaceuticals’ Unmask HPP Webinar Educational Event

December 1, 2020 @ 6:30 pm - 7:30 pm

Unmask HPP Webinar Educational Event December 1st, 2020 at 6:30 pm ET  Listen to a physician and a patient or caregiver discuss topics about hypophosphatasia (HPP) and a possible treatment option. Ask questions & gather information to discuss with your doctor.   To register for this Webinar Educational Event, click here. Alexion is a trademark of Alexion Pharmaceuticals, Inc. Alexion is registered with the United States Patent & Trademark Office, as well as in other countries. Copyright © 2020, Alexion…

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Bristol Myers Squibb’s The MS Mindshift Event Series

December 2, 2020 @ 4:00 pm - 5:00 pm

The MS MindShift initiative offers free educational online events that focus on helping people who live with multiple sclerosis (MS) better understand the critical role that healthy choices can have on the disease. A presentation from Mark Skeen, MD, Duke University Medical Center on the impact that healthy lifestyle choices can have on MS Personal journey shared by patient ambassador Nina Wellness topic: Art, presented by Anna Cunningham Click “REGISTER” to sign up. If you prefer to register over the phone, simply…

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Intercept Pharmaceuticals’ Learn About Primary Biliary Cholangitis Webinar

December 2, 2020 @ 7:00 pm - 8:00 pm

Learn About Primary Biliary Cholangitis Join us for an online event about primary biliary cholangitis (PBC). Don't miss out on a live Q&A session with a Nurse Educator* and an inspiring story from a Patient Ambassador* who will share their journey with a treatment option used in conjunction with ursodeoxycholic acid (UDCA). To register for this event, click here. *PBC Ambassador and Nurse Educator are being compensated by Intercept Pharmaceuticals, Inc. Acknowledgment: This event post is sponsored by Intercept Pharmaceuticals…

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Bristol Myers Squibb’s The MS Mindshift Event Series

December 3, 2020 @ 9:00 pm - 10:00 pm

The MS MindShift initiative offers free educational online events that focus on helping people who live with multiple sclerosis (MS) better understand the critical role that healthy choices can have on the disease. A presentation from Theodore Brown, MD, Evergreen MS Center on the impact that healthy lifestyle choices can have on MS Personal journey shared by patient ambassador Leika Wellness topic: Strength training, presented by Maria Rundell, PT, DPT Click “REGISTER” to sign up. If you prefer to register over the…

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Alexion Pharmaceuticals’ Unmask HPP Webinar Educational Event

December 7, 2020 @ 6:00 pm - 7:00 pm

Unmask HPP Webinar Educational Event December 7th, 2020 at 6:00 pm ET  Listen to a physician and a patient or caregiver discuss topics about hypophosphatasia (HPP) and a possible treatment option. Ask questions & gather information to discuss with your doctor.   To register for this Webinar Educational Event, click here. Alexion is a trademark of Alexion Pharmaceuticals, Inc. Alexion is registered with the United States Patent & Trademark Office, as well as in other countries. Copyright © 2020, Alexion…

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Managing Your PNH Live Webinar- Sponsored by Alexion Pharmaceuticals Inc.

December 9, 2020 @ 7:00 pm - 8:30 pm

Managing Your PNH Connect. Learn. Take Action. Live Webinar Wednesday, December 9, 2020 Alexion invites patients, families, and caregivers living with paroxysmal nocturnal hemoglobinuria (PNH) to an educational program for the PNH community. Please join us as we bring together patients and families living with PNH. Patient and Caregiver Ambassadors will share their personal stories and Bart Scott, MD, will share the latest thinking and knowledge about the disease and its management options. To register for this event, click here…

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CureDuchenne’s Mesentech and the Importance of Bone Health Webinar

December 10, 2020 @ 4:30 pm - 5:30 pm

Mesentech and the Importance of Bone Health December 10th, 2020 at 4:30 PM ET CureDuchenne, a nonprofit focused on Duchenne muscular dystrophy (DMD), has officially invested in Mesentech, Inc., through CureDuchenne Ventures. The company is in the process of developing a new therapy meant to address bone strength and density. Join this webinar to learn more about why CureDuchenne is investing in Mesentech, why bone health is so important in the treatment of Duchenne muscular dystrophy, and how Mesentech hopes…

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Super T’s Gift Card Bingo

December 12, 2020 @ 6:45 pm - 10:00 pm
$35

Join Super T's Mast Cell Foundation for... Super T's Gift Card B-I-N-G-O Saturday, December 12, 2020 Join in this virtual game of bingo to help fundraiser for the organization and have the opportunity to win gift cards as valuable as $150. Participants will also be entered into a raffle to win prizes as valuable as $300. Game boards can be sent either in the mail or can be scanned and emailed to participants. There will be 12 rounds of bingo…

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Managing Your Atypical HUS Live Webinar- Sponsored by Alexion Pharmaceuticals Inc.

December 14, 2020 @ 7:00 pm - 8:30 pm

Managing Your Atypical HUS Connect. Learn. Take Action. Live Webinar Monday, December 14th, 2020 Alexion invites patients and families living with atypical hemolytic uremic syndrome (HUS) to an educational program for the atypical HUS community. Please join us as we bring together patients and families living with atypical HUS. Patient and Caregiver Ambassadors will share their personal stories and Rita Swinford, MD, will share the latest thinking and knowledge about the disease and its management options. To register for this…

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January 2021

Ehlers-Danlos Society’s Pediatric Concerns in EDS and HSD: Exploring The Impact of Misdiagnosis

January 10 @ 9:00 am - 12:20 pm

Pediatric Concerns in EDS and HSD: Exploring The Impact of Misdiagnosis January 10, 2021 Virtual Webinar Event Hear from members of the Ehlers-Danlo syndrome community who have been affected by a child’s misdiagnosis: delays in care, mistreatment, allegations of child abuse, and the impact on physical and mental health. Click here to get registered.

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Burning Nights’ Online CRPS Support Group

January 13 @ 2:00 pm - 4:30 pm

Join Burning Nights CRPS Support for our next online complex regional pain syndrome (CRPS) support group on Wednesday, January 13, 2021. Burning Nights CRPS Support are still continuing to provide monthly online support groups for those affected by this syndrome. These support groups are for caregivers, patients, and family members. Click here to sign up.

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National Organization for Rare Disorders’ COVID-19 Vaccines Update Webinar

January 15 @ 2:00 pm - 2:45 pm

NORD's COVID-19 Vaccines Update Webinar FDA and CDC Leaders Address the Rare Disease Community January 15, 2021 NORD, in collaboration with the Muscular Dystrophy Association, Cystic Fibrosis Foundation, and The ALS Association, present a special webinar that will host leaders from the Centers for Disease Control (CDC) and US Food and Drug Administration (FDA) in order to talk to the rare disease community about the COVID-19 vaccines. So far vaccines from Pfizer and Moderna have been granted the FDA's Emergency…

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