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June 2021

The MDS Foundation’s Becoming a Partner in Your Care: MDS Support Group Webinar

June 5 @ 12:00 pm - 1:00 pm

Becoming a Partner in Your Care: MDS Support Group June 5, 2021 Speaker: Sandra Kurtin, PhD, ANP-C, AOCN; The University of Arizona Cancer Center This free webinar is geared to supporting patients and loved ones. Listen in to learn how to become a partner in your care. Learn more about self-care and the emotional, physical, and social challenges faced by caregivers and MDS patients. Connect with your community, learn, hear ideas, and have your questions answered. To register, click here.

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Angel Aid Cares’ Rare Mother Meetup

June 9 @ 6:00 pm - 7:00 pm

Rare Mother Meetup 6:00 PM, PST The Rare Mother Meetup will take place on the second Wednesday of each month and is hosted by Rare Mother Ashley Kenny. The meetup is meant as a safe place for Rare Mothers to connect and share with each other. There is no wrong way to participate in the Rare Mother Meetup; join for as long as you wish, with or without video. Click here to sign up.

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The Immune Deficiency Foundation’s National Primary Immunodeficiency Conference

June 23 - June 26

The Primary Immunodeficiency Conference June 23-26, 2021 This conference is the largest primary immunodeficiency (PI) patient gathering on Earth. Patients, clinicians, and caregivers will come together for this virtual event dedicated to community, education, and awareness surrounding primary immunodeficiency. For more info on this event, click here. To register for the conference, click here.

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National Organization for Rare Disorders’ Living Rare, Living Stronger Patient and Family Forum

June 26 - June 28
$39

The 2021 Living Rare, Living Stronger Patient and Family Interactive Virtual Forum Featuring the Rare Impact Awards June 26-28, 2021 This forum is specifically geared to be a patient-centric event. As always, this forum is meant to be a space for the rare disease community to converge for inspiration, education, networking, fun, and hope. The agenda includes sessions in which patients and their families can gain insight and practical tools for living their best lives with rare diseases, with workshops…

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The TAPS Support Foundation’s Twin Talks Webinars: Twin Anemia Polycythemia Sequence 101

June 29 @ 10:00 am - 11:00 am

Twin Talks Webinars: Twin Anemia Polycythemia Sequence 101 June 29, 2021 This webinar will be focused on answering any questions that the audience wants to know about twin anemia polycythemia sequence (TAPS). 07:00 am PDT, 9:00 am CDT, 10:00 am EDT, 3:00 pm BST 4:00pm CEST 12:00am AEST Moderator: Stephanie Ernst, TAPS Support Foundation Patient Special Guest: Bethany Beck, TAPS parent from Ohio Featured Speakers: Prof. Enrico Lopriore, Dr. Femke Slaghekke, Dr. Lisanne Tollenaar, Dr. Joanne Verweij & Dr. Jeanine van…

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July 2021

Cambridge Rare Disease Network’s RAREsummit21

July 2
£25

RAREsummit21 October 7, 2021 CRDN's RAREsummit21 is designed as a platform for change. This is an opportunity to hear from and engage with the stakeholders that are creating change across the rare disease landscape. Goals of the virtual event include: Raising awareness of rare diseases and their impacts Show examples of patient group collaboration with other stakeholders. Bring rare disease stakeholders together to drive new partnership opportunities. Equip stakeholders with the knowledge and skill to incorporate patients and patient advocates…

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The GRIN2B Foundation’s 2021 GRIN2B Family Weekend

July 9 - July 10
Hyatt Regency O’Hare, 9300 W Bryn Mawr Ave
Rosemont, IL 60018 United States
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$85

2021 GRIN2B Family Weekend July 9-10, 2021 This event is open to patients and families affected by GRIN2b-related neurodevelopmental disorder and related diseases. The weekend will be focused on building community, education, and providing families with critical support and resources. For registration and travel info, click here.

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Angel Aid Cares’ Rare Mother Meetup

July 14 @ 6:00 pm - 7:00 pm

Rare Mother Meetup 6:00 PM, PST The Rare Mother Meetup will take place on the second Wednesday of each month and is hosted by Rare Mother Ashley Kenny. The meetup is meant as a safe place for Rare Mothers to connect and share with each other. There is no wrong way to participate in the Rare Mother Meetup; join for as long as you wish, with or without video. Click here to sign up.

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Cystinosis Research Network’s 2021 Summer Online Conference

July 15 - July 19

The 2021 CRN Summer Online Conference "The Beat Goes On" July 15-19, 2021 While this event was originally slated to take place in person in Nashville, TN, in light of the ongoing COVID-19 pandemic, the conference will now occur online. This is in the interest of the safety and health of the cystinosis community. Don't miss the event as it is a vital opportunity for education, community support, and fun. For more information about this event, click here.

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Alagille Syndrome Alliance’s 9th International Symposium

July 16 - July 17

The 9th International Symposium on Alagille Syndrome "The Alagille Trail" July 16-17, 2021 The Alagille Syndrome Alliance is Discovering New Paths and Leaving No Stone Unturned at their 9th annual symposium in 2021. This year's event will be fully virtual in light of the ongoing COVID-19 pandemic. This year's event is presented by Mirum Pharmaceuticals and Albireo Pharma and is sponsored by Travere Therapeutics. The virtual platform will feature interactive booths and virtual lounges that will allow participants to connect…

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The MDS Foundation’s Webcast de MDS en Español

July 17 @ 12:00 pm - 1:00 pm

Que son los sindromes mielodisplasicos? Guillermo Montalbán Bravo, MD, MD Anderson Cancer Center Este seminario les va a proveer como se determina el diagnóstico de MDS, se estará enfocando en los subtipos y la manifestación de MDS. Comprendiendo el diagnostico de MDS y los detalles de los diferentes tratamientos, y las respuestas a las preguntas más comunes serán desarrolladas. Avances en el tratamiento de los sindromes mielodisplasicos.  Guillermo Garcia-Manero, MD, MD Anderson Cancer Center Además, estaremos proveyendo los tratamientos y…

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August 2021

The MDS Foundation’s Outcomes for High-Risk MDS Patients Undergoing Transplant vs. Standard Non-Transplant Therapies Webinar

August 7 @ 12:00 pm - 1:00 pm

Outcomes for High-Risk MDS Patients Undergoing Transplant vs. Standard Non-Transplant Therapies August 7, 2021 Speaker: Erica D. Warlick, MD, University of Minnesota Medical Center This free webinar provides an overview of allogeneic hematopoietic cell transplant as a treatment for high-risk MDS. This approach will be compared with other common treatment approaches, such as hypomethylating agents and other novel agents. To register, click here.

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Angel Aid Cares’ Rare Mother Meetup

August 11 @ 6:00 pm - 7:00 pm

Rare Mother Meetup 6:00 PM, PST The Rare Mother Meetup will take place on the second Wednesday of each month and is hosted by Rare Mother Ashley Kenny. The meetup is meant as a safe place for Rare Mothers to connect and share with each other. There is no wrong way to participate in the Rare Mother Meetup; join for as long as you wish, with or without video. Click here to sign up.

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SynGAP Research Fund’s Interpretation of Variants in SYNGAP1

August 19 @ 10:00 am - 11:00 am

Interpretation of Variants in SYNGAP1 August 19, 2021 with Eduardo Pérez Palma, PhD This webinar will feature a discussion of research related to genetic variants in SYNGAP1. Click here to sign up.

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September 2021

PAINWeek’s PAINWeek Conference 2021

September 7 - September 11
The Cosmopolitan of Las Vegas, 3708 Las Vegas Blvd S, Las Vegas, NV 89109
Las Vegas, NV 89109 United States
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$699

PAINWeek Conference 2021 September 7-11, 2021 The Cosmopolitan of Las Vegas This conference is the most extensive event focused on pain management. This event invites professionals such as psychologists, social workers, physicians, physician assistants, nurses, and more to come get informed about the latest research and approaches in managing pain. Click here to register.

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Angel Aid Cares’ Rare Mother Meetup

September 8 @ 6:00 pm - 7:00 pm

Rare Mother Meetup 6:00 PM, PST The Rare Mother Meetup will take place on the second Wednesday of each month and is hosted by Rare Mother Ashley Kenny. The meetup is meant as a safe place for Rare Mothers to connect and share with each other. There is no wrong way to participate in the Rare Mother Meetup; join for as long as you wish, with or without video. Click here to sign up.

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October 2021

Mission: Cure’s Moments of Hope Gala and Party

October 7 @ 8:00 pm - 9:30 pm

Moments of Hope Gala October 7, 2021 Celebrate with Mission: Cure as the organization shares progress from this year, recognizes the strength of its resilient patient community, and celebrates hope as they work towards the goal of finding a cure from chronic pancreatitis. This event will also include a live auction. The program will take place entirely online in light of COVID-19. The event is free, but donations are encouraged. To register, click here.

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Angel Aid Cares’ Rare Mother Meetup

October 13 @ 6:00 pm - 7:00 pm

Rare Mother Meetup 6:00 PM, PST The Rare Mother Meetup will take place on the second Wednesday of each month and is hosted by Rare Mother Ashley Kenny. The meetup is meant as a safe place for Rare Mothers to connect and share with each other. There is no wrong way to participate in the Rare Mother Meetup; join for as long as you wish, with or without video. Click here to sign up.

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The MDS Foundation’s CAR T Cell Therapy in MDS/AML Webinar

October 16 @ 12:00 pm - 1:00 pm

CAR T Cell Therapy in MDS/AML October 16, 2021 Speaker: David A. Sallman, MD, Moffitt Cancer Center This informational webinar will focus on a treatment approach called CAR T-cell therapy, a procedure in which the patient's own T-cells are extracted and modified in order to attack cancer. Learn about the latest advances in this form of treatment and the implications for people living with AML and MDS. To register, click here.

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The BHD Foundation’s BHD Virtual Symposium

October 21 - October 22

The BHD Virtual Symposium October 21-22, 2021 We would be absolutely delighted to welcome patients and families to both the clinical/research sessions as well as the patient-focused sessions. Please make sure you register for each of the events you wish to attend to ensure you receive the correct zoom link. Find more about the symposium and view the programme here. Register for the BHD clinical/research sessions here. Register for the BHD patient-focused sessions below: The Future of BHD Part 1…

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The International Pemphigus and Pemphigoid Foundation’s 2021 Virtual Patient Education Conference

October 22 - October 24

The 2021 Virtual Patient Education Conference October 22-24, 2021 Join the IPPF as we invite leading bullous disease experts to present on research and trends, educate about disease management, and answer tough questions regarding the care and treatment of pemphigus and pemphigoid. The 2021 IPPF Patient Education Conference will be an exciting and educational event for any patient, caregiver, family member, practitioner, researcher, or student in the bullous disease field. This is a FREE event. Click here to get signed…

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November 2021

SynGAP Research Fund’s Investigating the Functional Single Cell Biology of SYNGAP Pathways Webinar

November 4 @ 10:00 am - 11:00 am

The SYNGAP Research Fund Webinar: Investigating the Functional Single Cell Biology of SYNGAP1 Pathways November 4, 2021 Presented by Professor Michael Courtney To register, click here.

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Alexion Pharmaceuticals, Inc.’s Managing Your PNH Webinar

November 9 @ 7:30 pm - 8:30 pm

Managing Your PNH Connect. Learn. Take Action. November 9, 2021, 7:30 PM Connecting patients and caregivers in the paroxysmal nocturnal hemoglobinuria (PNH) community. To register, click here. Acknowledgment: This event post is sponsored by Alexion Pharmaceuticals and is promoted through the Patient Worthy Collaborative Content program. We only publish content that embodies our mission of providing relevant, vetted and valuable information to the rare disease community.

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Angel Aid Cares’ Rare Mother Meetup

November 10 @ 6:00 pm - 7:00 pm

Rare Mother Meetup 6:00 PM, PST The Rare Mother Meetup will take place on the second Wednesday of each month and is hosted by Rare Mother Ashley Kenny. The meetup is meant as a safe place for Rare Mothers to connect and share with each other. There is no wrong way to participate in the Rare Mother Meetup; join for as long as you wish, with or without video. Click here to sign up.

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Alex, The Leukodystrophy Charity’s Digital Community Weekend

November 20 @ 5:00 pm - November 21 @ 11:00 am
£75

Digital Community Weekend November 20-21, 2021 Alex, The Leukodystrophy Charity (Alex TLC) provides invaluable support and information to people affected by a genetic leukodystrophy. We are holding a digital community weekend on Saturday 20th and Sunday 21st November. Our weekend will include presentations about condition management, access to medicines, newborn screening, updates on existing and new research initiatives. There will be a professional round table, bringing research companies and medical professionals together to share information and encourage collaboration and progress. You…

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