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August 2020
Terrapinn’s World Orphan Drug Conference USA 2020
$3200
The World Orphan Drug Conference USA 2020 The Global Orphan Drug Conference and Expo August 24th - August 26th, 2o20 in National Harbor, MD The conference is an event that is primarily focused on the subject of developing medicines for rare diseases. With an expected 260 presentations and 1,500 stakeholders from at least 50 countries, this comprehensive event is global in scope and will cover the subject of rare disease research and drug development from every angle. To register for…
Find out more »September 2020
Global Genes’ RARE Patient Advocacy Summit
The Global Genes RARE Patient Advocacy Summit September 21-23, 2020 This conference will be a convergence of a variety of rare disease stakeholders, such as rare disease patients, world renowned experts, and caregivers. Attendees will leave this event with the skills necessary to be effective rare disease advocates as well as the latest knowledge about the latest in rare disease research and treatment. To learn more about this event, click here.
Find out more »October 2020
The VHL Alliance’s 14th International Medical/Research Symposium
$250
The 14th International VHL Medical/Research Symposium October 29-31, 2020 Amsterdam, Netherlands This event is geared towards the medical and research community. The conference will feature scientific research presentations on findings related to Von Hippel-Lindau syndrome. Patients and families are also welcome to attend to learn the latest in syndrome research. To register, click here.
Find out more »November 2020
Cambridge Rare Disease Network’s RAREfest20
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…
Find out more »January 2021
National Organization for Rare Disorders’ COVID-19 Vaccines Update Webinar
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…
Find out more »Rare Disease Legislative Advocates’ Special State Advocacy Webinar
Rare Disease Legislative Advocates' Special State Advocacy Webinar January 21, 2021 The special webinar from the RDLA will focus on rare disease advocacy at the state level. Attend this session to learn more about the importance and value of state advocacy as well as tips and tricks to help you navigate relationships with state officials and representatives. Click here to sign up.
Find out more »Rare Disease Legislative Advocates’ January Webinar
The Rare Disease Legislative Advocates' Monthly Webinar January 28, 2021 This months' webinar from the RDLA will focus on the policy priorities of the Everylife Foundation for year 2021, as well as the policy priorities for the Personalized Medicine Coalition. Specific goals to be discussed in this webinar include Cures 2.0, the Medical Nutrition Equity Act, and newborn screening/diagnostics. Click here to get signed up.
Find out more »February 2021
Angel Aid Cares’ Journaling and Resilience Workshop
Journaling and Resilience Workshop Pamela Alma Weymouth will lead an hour long session of reflection and journaling. Learn self-acceptance and gratitude while writing about your week to cultivate resilience and joy. This workshop will be held every Thursday at 11 AM PST. Click here to sign up.
Find out more »The Oley Foundation’s Oley Tube Feeding/TPN Virtual Support Group for Patients & Caregivers
Oley Tube Feeding/TPN Virtual Support Group for Patients & Caregivers February 11, 2021 Don't miss this support group for parents and caregivers that rely on tube feeding and intravenous nutrition. Click here to learn more about this event.
Find out more »Angel Aid Cares’ Spiritual Self-Care Workshop with Padma Gordon
Spiritual Self-Care Workshop Join embodied mindfulness Counselor Padma Gordon for a morning filled with discussion and meditation. The workshop includes a warmup grounding meditation followed by journaling and a conversation about the meaning of spirituality and the role that it plays in your life. Participants of all religious faiths and spiritual backgrounds are welcome. This is a recurring series held each Tuesday at 10 AM PST. Click here to sign up.
Find out more »Angel Aid Cares’ Journaling and Resilience Workshop
Journaling and Resilience Workshop Pamela Alma Weymouth will lead an hour long session of reflection and journaling. Learn self-acceptance and gratitude while writing about your week to cultivate resilience and joy. This workshop will be held every Thursday at 11 AM PST. Click here to sign up.
Find out more »Angel Aid Cares’ Spiritual Self-Care Workshop with Padma Gordon
Spiritual Self-Care Workshop Join embodied mindfulness Counselor Padma Gordon for a morning filled with discussion and meditation. The workshop includes a warmup grounding meditation followed by journaling and a conversation about the meaning of spirituality and the role that it plays in your life. Participants of all religious faiths and spiritual backgrounds are welcome. This is a recurring series held each Tuesday at 10 AM PST. Click here to sign up.
Find out more »The Orphan Disease Center’s 10th Anniversary Celebration
10 Year Anniversary Celebration of The Orphan Disease Center at the University of Pennsylvania February 24-25, 2021 This virtual, two day long event will feature speakers in science and medicine. In addition, there will be a tribute to George A. Weiss, the founder of the center. The program will focus on the achievements in diagnosis, research, and treatment for rare diseases that the center has helped achieve. Click here to register. For more info about this event, click here.
Find out more »Angel Aid Cares’ Journaling and Resilience Workshop
Journaling and Resilience Workshop Pamela Alma Weymouth will lead an hour long session of reflection and journaling. Learn self-acceptance and gratitude while writing about your week to cultivate resilience and joy. This workshop will be held every Thursday at 11 AM PST. Click here to sign up.
Find out more »March 2021
National Institutes of Health’s Virtual Rare Disease Day
Rare Disease Day at NIH March 1, 2021 Rare Disease Day is held every year to help raise awareness surrounding rare diseases and the people that are impacted by them. The event also aims to inform the public about the ongoing research collaborations involving the NIH that are vital to improving the lives of patients. While this year's event will be hosted virtually due to the ongoing COVID-19 pandemic, it will still include the sharing of rare disease stories, interactive…
Find out more »Global Genes and the EveryLife Foundation’s Rare on the Road 2021: A Rare Disease Leadership Interactive Webinar
RARE on the Road 2021: Rare Disease Leadership Tour A Rare Disease Leadership Interactive Webinar March 23, 2021 Global Genes and the EveryLife Foundation for Rare Diseases have worked together since 2017 on the RARE on the Road project, serving to develop new leaders in rare disease advocacy and hosting events around the country. At this time the 2021 tour will include this interactive webinar and three in-person events. The in-person events will be held in accordance with local laws…
Find out more »Angel Aid Cares’ Journaling and Resilience Workshop
Journaling and Resilience Workshop Pamela Alma Weymouth will lead an hour long session of reflection and journaling. Learn self-acceptance and gratitude while writing about your week to cultivate resilience and joy. This workshop will be held every Thursday at 11 AM PST. Click here to sign up.
Find out more »Angel Aid Cares’ Rare Mother Meetup
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.
Find out more »Angel Aid Cares’ Journaling and Resilience Workshop
Journaling and Resilience Workshop Pamela Alma Weymouth will lead an hour long session of reflection and journaling. Learn self-acceptance and gratitude while writing about your week to cultivate resilience and joy. This workshop will be held every Thursday at 11 AM PST. Click here to sign up.
Find out more »Angel Aid Cares’ Journaling and Resilience Workshop
Journaling and Resilience Workshop Pamela Alma Weymouth will lead an hour long session of reflection and journaling. Learn self-acceptance and gratitude while writing about your week to cultivate resilience and joy. This workshop will be held every Thursday at 11 AM PST. Click here to sign up.
Find out more »Angel Aid Cares’ Journaling and Resilience Workshop
Journaling and Resilience Workshop Pamela Alma Weymouth will lead an hour long session of reflection and journaling. Learn self-acceptance and gratitude while writing about your week to cultivate resilience and joy. This workshop will be held every Thursday at 11 AM PST. Click here to sign up.
Find out more »NORD’s The Rare Sibling Experience Webinar
The Rare Sibling Experience March 25, 2021 Rare disease impacts extend beyond the patient themselves and can have a profound effect on families. Siblings of rare patients are placed in an unusual position replete with its own challenges. This program will investigate the role of rare siblings with input from multiple experts on the subject including: Eden Van Alstine, MS, CCLS, Child Life Specialist, Children's Hospital of Philadelphia Kate McGowen, MEd, CCLS II, Child Life Specialist, Children's Hospital of Philadelphia…
Find out more »April 2021
Angel Aid Cares’ Rare Mother Meetup
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.
Find out more »Terrapinn’s World Orphan Drug Congress USA 2021 Virtual Event
World Orphan Drug Congress USA 2021 Free Virtual Event Online April 28, 2021 The Global Orphan Drug Conference and Expo Don't miss out on this global event featuring over 1,000 rare disease stakeholders from around the world. This online event will feature over 50 speakers that will discuss a variety of relevant topics, such as advocacy, rare disease clinical development, and the latest, most advanced therapies. Get involved and join the conversation about new developments and ideas through exclusive, informative…
Find out more »May 2021
Global Genes and the EveryLife Foundation’s Rare on the Road 2021: Virtual Training and Networking
RARE on the Road 2021: Rare Disease Leadership Tour Virtual Training and Networking: Nevada May 4, 2021 Global Genes and the EveryLife Foundation for Rare Diseases have worked together since 2017 on the RARE on the Road project, serving to develop new leaders in rare disease advocacy and hosting events around the country. At this time the 2021 tour will include an interactive webinar and three state-specific virtual events. Registration opens in February 2021. For more info, click here.
Find out more »
