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Tue11Aug2020Great Ormond Street Hospital Great Ormond Street, Holborn, London WC1N 3JH, UK
MPS Society
Clinics allow individuals affected by MPS, Fabry and or a related disease to see a specialist consultant and, where possible, other medical professionals on the same day. This reduces the need to attend a number of separate appointments. Clinics also enable individuals and families to meet with one another as well as with members of the support and advocacy team who also attend the clinics.
https://www.mpssociety.org.uk/eventsandclinics
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Fri14Aug2020Birmingham Children's Hospital, Steelhouse Ln, Birmingham B4 6NH, UK
MPS Society
Clinics allow individuals affected by MPS, Fabry and or a related disease to see a specialist consultant and, where possible, other medical professionals on the same day. This reduces the need to attend a number of separate appointments. Clinics also enable individuals and families to meet with one another as well as with members of the support and advocacy team who also attend the clinics.
https://www.mpssociety.org.uk/eventsandclinics
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Sun16Aug2020ondon and finishes in Surrey.
MPS Society
Stunning scenery and a route that is suitable for both amateurs and elite riders alike, means that the Prudential RideLondon–Surrey is an unmissable event for any cycling enthusiast.
https://www.mpssociety.org.uk/cycle
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Fri21Aug2020Birmingham Children's Hospital, Steelhouse Ln, Birmingham B4 6NH, UK
MPS Society
Clinics allow individuals affected by MPS, Fabry and or a related disease to see a specialist consultant and, where possible, other medical professionals on the same day. This reduces the need to attend a number of separate appointments. Clinics also enable individuals and families to meet with one another as well as with members of the support and advocacy team who also attend the clinics.
https://www.mpssociety.org.uk/eventsandclinics
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Fri21Aug2020Sat22Aug2020Hilton Union Square, San Francisco, California, United States
Cure GM1 Foundation
This gathering will be focused on the patient community, patient advocacy, and inspiration in beautiful San Francisco, CA!
https://curegm1.org/2020-gm1-family-meeting-san-francisco/
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Sun23Aug2020Paultons Park Home of Peppa Pig World Ower, Romsey SO51 6AL, United Kingdom
MPS Society
Based in The New Forest and home to Peppa Pig World this trip is perfect for families wanting to enjoy a day out in the south of the country.
https://www.mpssociety.org.uk/events2020
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Sat29Aug2020Troy, OH
Be The Match
This Buckeye Be The Match Donut Dash unites communities across Troy, OH in support of helping patients in need of a blood stem cell transplant.
http://www.bethematchfoundation.org/site/TR?fr_id=4435&pg=entry&_ga=2.257057355.1965547915.1584041452-1517304315.1584041452
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Tue01Sep2020Wed30Sep2020
Krabbe Connect
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Tue01Sep2020Wed30Sep2020
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Fri11Sep2020Minneapolis Greek Festival
Chloe’s Fight
https://chloesfight.org/events/savethedate2020/
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Sun13Sep2020Newcastle
MPS Society
Starting in Newcastle upon Tyne the 13.1 mile route takes runners through the city centre towards the River Tyne, the Red Arrows even pass pverhead at the start.
https://www.mpssociety.org.uk/run
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Fri18Sep2020Birmingham Children's Hospital, Steelhouse Ln, Birmingham B4 6NH, UK
MPS Society
Clinics allow individuals affected by MPS, Fabry and or a related disease to see a specialist consultant and, where possible, other medical professionals on the same day. This reduces the need to attend a number of separate appointments. Clinics also enable individuals and families to meet with one another as well as with members of the support and advocacy team who also attend the clinics.
https://www.mpssociety.org.uk/eventsandclinics
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Sun20Sep2020Westland, MI
Be The Match
This Michigan Marrow Walk & Fun Run unites communities across Westland, MI in support of helping patients in need of a blood stem cell transplant.
http://www.bethematchfoundation.org/site/TR?fr_id=4433&pg=entry&_ga=2.190063339.1965547915.1584041452-1517304315.1584041452
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Mon21Sep2020Wed23Sep20208:00 amSheraton San Diego Hotel & Marina 1380 Harbor Island Drive, San Diego, California, United States of America
Global Genes
As the largest gathering of rare disease patients, caregivers, thought leaders and other rare disease stakeholders in the world, the RARE Patient Advocacy Summit is an unparalleled opportunity to forge meaningful connections with other rare advocates and take home actionable strategies and tools to accelerate change.
https://globalgenes.org/event/patient-summit/
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Tue22Sep2020Great Ormond Street Hospital Great Ormond Street, Holborn, London WC1N 3JH, UK
MPS Society
Clinics allow individuals affected by MPS, Fabry and or a related disease to see a specialist consultant and, where possible, other medical professionals on the same day. This reduces the need to attend a number of separate appointments. Clinics also enable individuals and families to meet with one another as well as with members of the support and advocacy team who also attend the clinics.
https://www.mpssociety.org.uk/eventsandclinics
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Fri25Sep2020Sun04Oct2020Kilimanjaro, Africa.
MPS Society
Its snow-capped summit rises high above the dusty African plains; huge permanent glaciers flow down from the summit, spectacular views and beautiful ice formations are the reward for pushing your limits both physically and mentally.
https://www.mpssociety.org.uk/trek
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Sat26Sep2020Sun27Sep2020UK
MPS Society
Aimed at providing information and education for the Sanfilippo community, this meeting will also allow families affected by Sanfilippo to attend workshops, hear first-hand experiences from other patients, carers and family members, and to meet others living with MPS III.
https://www.mpssociety.org.uk/expert-events
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Thu01Oct2020Sherwood Forest in Nottinghamshire, England
MPS Society
Bereaved families can visit the Remembrance Wood with the support of MPS Society staff and other families. Over the same weekend we also hold planting days where families are can plant a tree in memory of a loved one who had MPS, Fabry or a related disease.
https://www.mpssociety.org.uk/events2020
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Sat03Oct2020Morgantown, WV
Aidan Jack Seeger Foundation
https://www.aidanhasaposse.org/ride-calendar-2020.html
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Thu08Oct2020Fri09Oct2020Washington, D.C.
NORD
Timely topics including drug pricing, advancements in technology and more.
https://rarediseases.org/summit-overview/
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Fri09Oct2020Royal Manchester Children's Hospital, Oxford Rd, Manchester M13 9WL, UK
MPS Society
Clinics allow individuals affected by MPS, Fabry and or a related disease to see a specialist consultant and, where possible, other medical professionals on the same day. This reduces the need to attend a number of separate appointments. Clinics also enable individuals and families to meet with one another as well as with members of the support and advocacy team who also attend the clinics.
https://www.mpssociety.org.uk/eventsandclinics
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Sat10Oct2020
Metabol!c Support UK
https://www.metabolicsupportuk.org/events/
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Sun11Oct2020Buckingham Palace
MPS Society
This stunning 13.1 mile route takes in the capital’s world-famous landmarks on closed roads – Buckingham Palace, London Eye, Houses of Parliament and the Royal Albert Hall – and four of London’s eight Royal Parks – Hyde Park, The Green Park, St James’s Park and Kensington Gardens.
https://www.mpssociety.org.uk/run
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Thu15Oct2020Fri16Oct2020400 Arch Street, Philadelphia, Pennsylvania, United States of America
The Family Resource Network
The conference will feature an array of breakout sessions highlighting the impact of resilience on personal health and caregiving.
https://globalgenes.org/event/national-caregivers-conference/
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Fri16Oct2020Royal Manchester Children's Hospital, Oxford Rd, Manchester M13 9WL, UK
MPS Society
Clinics allow individuals affected by MPS, Fabry and or a related disease to see a specialist consultant and, where possible, other medical professionals on the same day. This reduces the need to attend a number of separate appointments. Clinics also enable individuals and families to meet with one another as well as with members of the support and advocacy team who also attend the clinics.
https://www.mpssociety.org.uk/eventsandclinics
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Fri16Oct2020Birmingham Children's Hospital, Steelhouse Ln, Birmingham B4 6NH, UK
MPS Society
Clinics allow individuals affected by MPS, Fabry and or a related disease to see a specialist consultant and, where possible, other medical professionals on the same day. This reduces the need to attend a number of separate appointments. Clinics also enable individuals and families to meet with one another as well as with members of the support and advocacy team who also attend the clinics.
https://www.mpssociety.org.uk/eventsandclinics
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Mon19Oct2020Fri23Oct2020Marriott Marquis
2020 ICNA-CNS Meeting
https://www.childneurologysociety.org/meetings/future-cns-annual-meetings
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Tue20Oct2020
Krabbe Connect
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Sun25Oct2020Wed28Oct2020Disneyland Paris
MPS Society
MPS Society is inviting members and their families to join us for a trip of a lifetime to Disneyland Paris. Families need time to have fun together and create magical memories to share, which is especially important for families who have a child with a life-limiting condition.
https://www.mpssociety.org.uk/disneyland-paris
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Tue27Oct2020Great Ormond Street Hospital Great Ormond Street, Holborn, London WC1N 3JH, UK
MPS Society
Clinics allow individuals affected by MPS, Fabry and or a related disease to see a specialist consultant and, where possible, other medical professionals on the same day. This reduces the need to attend a number of separate appointments. Clinics also enable individuals and families to meet with one another as well as with members of the support and advocacy team who also attend the clinics.
https://www.mpssociety.org.uk/eventsandclinics
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Sun01Nov2020Whitmoor Forest Swinley Road, Ascot, Berkshire, SL5 8BD , UK
MPS Society
Always a popular event we can't wait to enjoy the wonderment of childhood through this magical world where Father Christmas and his elves come to life in Whitmoor Forest, Ascot.
https://www.mpssociety.org.uk/events2020
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Sat07Nov2020The Meritage Restaurant Glendale, Ohio
Partners For Krabbe Research
Proceeds from sales of the book, Just Like Me! are used for funding programs that Partners For Krabbe Research supports.
https://www.krabbes.org/events
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Tue10Nov2020Great Ormond Street Hospital Great Ormond Street, Holborn, London WC1N 3JH, UK
MPS Society
Clinics allow individuals affected by MPS, Fabry and or a related disease to see a specialist consultant and, where possible, other medical professionals on the same day. This reduces the need to attend a number of separate appointments. Clinics also enable individuals and families to meet with one another as well as with members of the support and advocacy team who also attend the clinics.
https://www.mpssociety.org.uk/eventsandclinics
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Thu12Nov2020Sun15Nov2020BARRETT FAMILY RANCH Orange, California, United States of America
ANGEL AID
Retreat Facilitator: Laura Riordan, PhD – A holistic life coach and author of the Sustainable Mom workshop series with 20 yrs in the mind and body wellness industry.
https://angelaidretreat.funraise.org/
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Sat14Nov2020
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Fri20Nov2020Birmingham Children's Hospital, Steelhouse Ln, Birmingham B4 6NH, UK
MPS Society
Clinics allow individuals affected by MPS, Fabry and or a related disease to see a specialist consultant and, where possible, other medical professionals on the same day. This reduces the need to attend a number of separate appointments. Clinics also enable individuals and families to meet with one another as well as with members of the support and advocacy team who also attend the clinics.
https://www.mpssociety.org.uk/eventsandclinics
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Tue24Nov2020Great Ormond Street Hospital Great Ormond Street, Holborn, London WC1N 3JH, UK
MPS Society
Clinics allow individuals affected by MPS, Fabry and or a related disease to see a specialist consultant and, where possible, other medical professionals on the same day. This reduces the need to attend a number of separate appointments. Clinics also enable individuals and families to meet with one another as well as with members of the support and advocacy team who also attend the clinics.
https://www.mpssociety.org.uk/eventsandclinics
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Sat12Dec2020Temecula, California
Aidan Jack Seeger Foundation
https://www.aidanhasaposse.org/ride-calendar-2020.html
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Fri18Dec2020Birmingham Children's Hospital, Steelhouse Ln, Birmingham B4 6NH, UK
MPS Society
https://www.mpssociety.org.uk/eventsandclinics
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Tue22Dec2020Great Ormond Street Hospital Great Ormond Street, Holborn, London WC1N 3JH, UK
MPS Society
Clinics allow individuals affected by MPS, Fabry and or a related disease to see a specialist consultant and, where possible, other medical professionals on the same day. This reduces the need to attend a number of separate appointments. Clinics also enable individuals and families to meet with one another as well as with members of the support and advocacy team who also attend the clinics.
https://www.mpssociety.org.uk/eventsandclinics
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Fri01Jan2021
The Calliope Joy Foundation
https://www.thecalliopejoyfoundation.org/aboutus
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Wed13Jan2021Sat16Jan2021Berlin, Germany
The BLACKSWAN Foundation and IRDiRC, the International Rare Diseases Research Consortium
It aims to bring together scientific leaders and experts and young scientists from a variety of breakthrough scientific fields to present cutting-edge research, exchange ideas, and discuss policies related to rare diseases research.
https://www.react-congress.org/about/
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Tue01Jun2021Sat05Jun2021Scottish Event Campus (SEC) in Glasgow, United Kingdom.
EPNS
learn about the latest developments in the rapidly evolving field of child neurology including basic science, diagnostic methods and novel treatments.
https://epns-congress.com/