• Wed
    01
    Apr
    2020
    Sun
    31
    May
    2020

    Winner’s Choice Virtual Fundraiser

    Virtual Fundraiser

    Krabbe Connect

    Learn More: https://krabbeconnect.org/community-engagement/events/

  • Thu
    28
    May
    2020
    Sun
    31
    May
    2020

    The 42nd NTSAD Annual Family Conference

    Renaissance Denver Stapleton 3801 Quebec Street Denver, CO 80207

    NTSAD

    https://ntsadannualfamilyconference.com/

  • Tue
    02
    Jun
    2020

    Cerebral ALD Patients, Families, and Caregivers (Pre-, Post-, and Non-Transplanted)

    1:00 amOnline

    Facilitated  by Jesse Torrey

    Register for Meeting | Join the Zoom Meeting

  • Sat
    06
    Jun
    2020

    Aidan's Rides 2020

    Brooklyn, NY

    Aidan Jack Seeger Foundation

    https://www.aidanhasaposse.org/ride-calendar-2020.html

  • Sat
    06
    Jun
    2020
    Sun
    07
    Jun
    2020

    Family weekend to Alton Towers

    Alton Towers in Alton, Staffordshire, England

    MPS Society

    A weekend break to this theme park based in Staffordshire will be lots of fun for all the family with over 40 rides and attractions to enjoy.

    https://www.mpssociety.org.uk/events2020

  • Thu
    11
    Jun
    2020
    Fri
    12
    Jun
    2020

    RARE Drug Development Symposium

    201 North 17th Street, Philadelphia, Pennsylvania, United States of America

    Global Genes, in partnership with the Orphan Disease Center at the University of Pennsylvania School of Medicine

    https://globalgenes.org/event/advocacy-symposium/

  • Fri
    12
    Jun
    2020

    Rare of the rare expert meeting

    UK

    MPS Society

    The expert meeting will bring together all the knowledge from across the lysosomal storage disease and other rare disease community to share information and understanding, to find out where the gaps in knowledge are and to find out how we can fill these gaps. Open to experts only.
    Contact us for more
    MPS_35years_20170708_031_web.jpg

    https://www.mpssociety.org.uk/expert-events

  • Fri
    19
    Jun
    2020

    All Day HSCT and MPS l

    Birmingham 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

  • Fri
    19
    Jun
    2020
    Sat
    20
    Jun
    2020

    Scientific Conference and Family Conference 19 and 20 June 2020

    Holiday Inn in Telford International Centre, St Quentin Gate, Telford TF3 4EH, United Kingdom

    MLD Support Association UK

    The focus this year will be on Support, Care and Therapies for MLD sufferers. 

    https://www.mldsupportuk.org.uk/2020/02/28/2020-conference-news/

  • Sat
    20
    Jun
    2020

    Aidan's Rides 2020

    Belmar, New Jersey

    Aidan Jack Seeger Foundation

    https://www.aidanhasaposse.org/ride-calendar-2020.html

  • Thu
    25
    Jun
    2020
    Fri
    26
    Jun
    2020

    2020 Scientific Symposium - CANCELLED

    We are very sad to announce that we will not be hosting our Scientific Symposium this year. Instead, we are focusing our energies into hosting a fully virtual Family Conference! Medical professionals are more than welcome to participate in the Family Conference, as they always have in the past. Check out what we have planned so far!

    If you have any questions, please reach out to the ULF by email at office@ulf.org, or by calling 815-748-3211.

     

  • Fri
    26
    Jun
    2020
    Sat
    27
    Jun
    2020

    2020 Family Conference

    Online

    We are excited to announce our annual Family Conference will NOT be cancelled due to the COVID-19 pandemic. We will be hosting our meeting virtually this year so that the ULF Community can still come together to connect, share, and learn. 

    We are planning a combination of live and pre-recorded webinars, live support groups, activities for children and families, and more.

    Learn More

     

  • Mon
    06
    Jul
    2020
    Mon
    13
    Jul
    2020

    Metabolic Disorders Awareness Week

    Metabol!c Support UK

    https://www.metabolicsupportuk.org/events/

  • Fri
    10
    Jul
    2020

    All Day BMT

    Royal 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

  • Thu
    16
    Jul
    2020

    Superhero in the City

    London

    MPS Society

    Superhero in the City is London's iconic 5k Superhero Run. Launching for the first time on 16 July 2020 at 6.55pm. This is the only running event where you'll run past some of the most iconic locations in London or the world, dressed as a superhero of your choice!

    https://www.mpssociety.org.uk/run

  • Fri
    17
    Jul
    2020

    All Day BMT

    Royal 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

  • Fri
    17
    Jul
    2020

    All Day Fabry

    Birmingham 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

  • Wed
    22
    Jul
    2020
    Sun
    26
    Jul
    2020

    2020 Family Symposium

    Holiday Valley Resort, Ellicottville, NY

    Hunter’s Hope

    This annual multidisciplinary workshop brings together over 60 of the world’s leading experts in Leukodystrophies and newborn screening to discuss advances in medical care and research for these devastating diseases.

    https://www.huntershope.org/family-care/family-medical-symposium/

  • Fri
    24
    Jul
    2020
    Sat
    25
    Jul
    2020

    2020 PMD Conference: A Family Symposium, Health Fair and Scientific Workshop

    Children’s Hospital of Philadelphia (CHOP) 3615 Civic Center Boulevard Philadelphia, PA 19104 and The Study Hotel University City 2nd Floor Conference Center 20 South 33rd Street Philadelphia, PA 19104

    The PMD Foundation in partnership with the Global Leukodystrophy Initiative (GLIA) and the Leukodystrophy Center at Children's Hospital of Philadelphia.

    Patients and families affected by Pelizaeus-Merzbacher Disease (PMD) are invited to attend

    https://www.pmdfoundation.org/pmd-conference

  • Tue
    04
    Aug
    2020

    Wiggin Out for Willow

    7:00 pmMardi Gras World, 1380 Port of New Orleans Place New Orleans, LA 70130 United States

    United MSD Foundation

  • Wed
    05
    Aug
    2020

    Aidan's Rides 2020

    Sturgis, South Dakota

    Aidan Jack Seeger Foundation

    https://www.aidanhasaposse.org/ride-calendar-2020.html

  • Tue
    11
    Aug
    2020

    All Day MPS lll

    Great 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

  • Fri
    14
    Aug
    2020

    All Day LAL D

    Birmingham 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

  • Sun
    16
    Aug
    2020

    Prudential RideLondon-Surrey 100

    ondon 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

  • Fri
    21
    Aug
    2020

    All Day MPS lll Sanfilippo

    Birmingham 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

  • Fri
    21
    Aug
    2020
    Sat
    22
    Aug
    2020

    GM1 Family Meeting

    Hilton 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/

  • Sun
    23
    Aug
    2020

    Family day to Paultons Park

    Paultons 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

  • Sat
    29
    Aug
    2020

    Buckeye Be The Match Donut Dash

    Troy, 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

  • Tue
    01
    Sep
    2020
    Wed
    30
    Sep
    2020

    #CureKrabbe Campaign for Leukodystrophy Awareness Month

    Krabbe Connect

  • Tue
    01
    Sep
    2020
    Wed
    30
    Sep
    2020

    Leukodystrophy Awareness Month

  • Fri
    11
    Sep
    2020

    2020 Chloe’s Fight 5K Family Run & Walk

    Minneapolis Greek Festival

    Chloe’s Fight

    https://chloesfight.org/events/savethedate2020/

  • Sun
    13
    Sep
    2020

    Great North Run

    Newcastle

    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

  • Fri
    18
    Sep
    2020

    All Day MPS IVA

    Birmingham 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

  • Sun
    20
    Sep
    2020

    Walk & Fun Run

    Westland, 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

  • Mon
    21
    Sep
    2020
    Wed
    23
    Sep
    2020

    RARE Patient Advocacy Summit

    8:00 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/

  • Tue
    22
    Sep
    2020

    All Day MPS IV

    Great 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

  • Fri
    25
    Sep
    2020
    Sun
    04
    Oct
    2020

    Trek Kilimanjaro

    Kilimanjaro, 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

  • Sat
    26
    Sep
    2020
    Sun
    27
    Sep
    2020

    MPS III Expert and Patient Meeting

    UK

    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

  • Thu
    01
    Oct
    2020

    Weekend of Hope and Remembrance

    Sherwood 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

  • Sat
    03
    Oct
    2020

    Aidan's Rides 2020

    Morgantown, WV

    Aidan Jack Seeger Foundation

    https://www.aidanhasaposse.org/ride-calendar-2020.html

  • Thu
    08
    Oct
    2020
    Fri
    09
    Oct
    2020

    Rare Diseases and Orphan Products Breakthrough Summit

    Washington, D.C.

    NORD

    Timely topics including drug pricing, advancements in technology and more.

    https://rarediseases.org/summit-overview/

  • Fri
    09
    Oct
    2020

    All Day BMT

    Royal 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

  • Sat
    10
    Oct
    2020

    Annual Conference

    Metabol!c Support UK

    https://www.metabolicsupportuk.org/events/

  • Sun
    11
    Oct
    2020

    Royal Parks Half Marathon

    Buckingham 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

  • Thu
    15
    Oct
    2020
    Fri
    16
    Oct
    2020

    National Caregivers Conference

    400 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/

  • Fri
    16
    Oct
    2020

    All Day BMT

    Royal 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

  • Fri
    16
    Oct
    2020

    All Day Mixed Clinic

    Birmingham 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

  • Mon
    19
    Oct
    2020
    Fri
    23
    Oct
    2020

    16th International Child Neurology Society Meeting & 49th Annual Child Neurology Meeting

    Marriott Marquis

    2020 ICNA-CNS Meeting

    https://www.childneurologysociety.org/meetings/future-cns-annual-meetings

  • Tue
    20
    Oct
    2020

    A Million Dreams Gala

    Krabbe Connect

  • Sun
    25
    Oct
    2020
    Wed
    28
    Oct
    2020

    Family weekend to Disneyland Paris 2020

    Disneyland 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

  • Tue
    27
    Oct
    2020

    All Day MPS lll

    Great 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

  • Sun
    01
    Nov
    2020

    Family day to Lapland UK

    Whitmoor 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

  • Sat
    07
    Nov
    2020

    2020 p4KR Halfway to Derby Fundraiser

    The 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

  • Tue
    10
    Nov
    2020

    All Day MPS l BMT

    Great 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

  • Thu
    12
    Nov
    2020
    Sun
    15
    Nov
    2020

    Rare Mothers Wellness Retreat

    BARRETT 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/

  • Sat
    14
    Nov
    2020

    Rooted In Rare

    8:00 amtba

    United MSD Foundation

  • Fri
    20
    Nov
    2020

    All Day MPS VI

    Birmingham 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

  • Tue
    24
    Nov
    2020

    All Day MPS IV

    Great 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

  • Sat
    12
    Dec
    2020

    Aidan's Rides 2020

    Temecula, California

    Aidan Jack Seeger Foundation

    https://www.aidanhasaposse.org/ride-calendar-2020.html

  • Fri
    18
    Dec
    2020

    All Day MPS lll Sanfilippo

    Birmingham Children's Hospital, Steelhouse Ln, Birmingham B4 6NH, UK

    MPS Society

    https://www.mpssociety.org.uk/eventsandclinics

  • Tue
    22
    Dec
    2020

    All Day MPS l BMT

    Great 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

  • Fri
    01
    Jan
    2021

    Cupcake Gala

    The Calliope Joy Foundation

    https://www.thecalliopejoyfoundation.org/aboutus

  • Wed
    13
    Jan
    2021
    Sat
    16
    Jan
    2021

    RE(ACT) Congress and IRDiRC Conference 2021

    Berlin, 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/

  • Tue
    01
    Jun
    2021
    Sat
    05
    Jun
    2021

    14th biennial congress of the European Paediatric Neurology Society

    Scottish 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/

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