upcoming events

  • Tue
    17
    Mar
    2020
    3:00 pmAmsterdam, Berlin, Rome, Stockholm, Vienna

    European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN).

    The speaker is Pediatric Neurologist from the University Medical Center in Amsterdam, the Netherlands. He is an expert on adrenoleukodystrophy and other neurodegenerative diseases.

    Register Here: https://zoom.us/webinar/register/7915804731311/WN_Ii7-CQVORVCWTfsUONVsxg

  • Sat
    28
    Mar
    2020
    Sun
    29
    Mar
    2020
    Dijon, France

    The Health Economics team of the Economics Laboratory of Dijon (University of Burgundy)

    Solve RD aims to improve the diagnosis of patients with rare diseases through the development of genomic medicine.

    Register Here: http://www.ern-rnd.eu/?p=6748

  • Mon
    30
    Mar
    2020
    Thu
    02
    Apr
    2020
    50 Park Plaza, Boston, Massachusetts, United States of America

    Hanson Wade

    Focus exclusively on overcoming the late-stage commercial challenges drug developers face when delivering gene therapies to market.

    Register Here: https://genetherapy-conference.com/take-part/register/?utm_source=external-global-genes&utm_medium=listing/backlink&utm_campaign=15104-gtx-global-genes

  • Wed
    01
    Apr
    2020
    Sun
    31
    May
    2020
    Virtual Fundraiser

    Krabbe Connect

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

  • Fri
    03
    Apr
    2020
    online

    VWM Families Foundation

    Money raised by the VWM Families Foundation funds VWM research projects and supports families living with VWM with critical expenses not covered by insurance.

  • Sat
    04
    Apr
    2020
    Oak Ridge, NC

    Be The Match

    This Triad Be The Match 5K unites communities across Oak Ridge, NC in support of helping patients in need of a blood stem cell transplant.

    http://www.bethematchfoundation.org/site/TR?fr_id=4423&pg=entry&_ga=2.258221514.1965547915.1584041452-1517304315.1584041452

  • Sat
    04
    Apr
    2020
    3:00 pm263 Lakeshore Drive, Americus, Georgia, United States of America

    Nathan Peck

    Celebration with a low country boil, snoballs, music, jet skiing, swimming, paddle boarding, classic arcade tourney, silent auction and fellowship

    https://curevcp.networkforgood.com/events/17025-cure-vcp-disease-fundraiser-in-americus-ga

  • Sun
    05
    Apr
    2020
    Champs Elysées

    MPS Society

    Take in the splendour of Paris with every stride of this marathon. You'll begin on the world-famous Champs Elysées, continue past the Eiffel Tower, Notre Dame Cathedral and finish at the Avenue Foch.

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

  • Tue
    14
    Apr
    2020
    12:00 pmwebinar

    Be The Match

    You will learn the basic information about bone marrow and cord blood transplant and how to prepare for it.

    https://bethematch.webex.com/mw3300/mywebex/default.do?nomenu=true&siteurl=bethematch&service=6&rnd=0.42139904320428256&main_url=https%3A%2F%2Fbethematch.webex.com%2Fec3300%2Feventcenter%2Fevent%2FeventAction.do%3FtheAction%3Ddetail%26%26%26EMK%3D4832534b00000004a45cb28bd46b9b2bf31658c244247f0acfcd93dc29ce5e0f593604db7073b391%26siteurl%3Dbethematch%26confViewID%3D150359568968322270%26encryptTicket%3DSDJTSwAAAARJ0KZm7n8XoWWBJKMF2Fl1keItd2wcqYV1w_agIJLMRw2%26

  • Tue
    14
    Apr
    2020
    3:00 pmAmsterdam, Berlin, Rome, Stockholm, Vienna

    European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN)

    The speaker is neurologist from the University Hospital Bordeaux, France.

    https://zoom.us/webinar/register/6715792515924/WN_LGdn6fCEQ8q0I3sbLacWiA

  • Sat
    18
    Apr
    2020
    Charleston, SC

    Be The Match

    This Charleston Match to Marrow 5K unites communities across Charleston, SC in support of helping patients in need of a blood stem cell transplant.

    http://www.bethematchfoundation.org/site/TR?fr_id=4434&pg=entry&_ga=2.247090372.1965547915.1584041452-1517304315.1584041452

  • Sat
    18
    Apr
    2020
    St. Louis, MISSOURI

    Aidan Jack Seeger Foundation

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

  • Sat
    18
    Apr
    2020
    11:00 amultragenyx, Novato, CA

    Ultragenyx

    Star Wars" themed day of live music, food, games, refreshments and to meet people dedicated to working on rare disease treatments.

    https://web.cvent.com/event/a0191f28-f962-41b9-85ed-d13ee6e1e28a/summary?rt=133sW5DYpUKaxTobS0iLNg

  • Tue
    21
    Apr
    2020
    3:00 pmAmsterdam, Berlin, Rome, Stockholm, Vienna

    European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN)

    The speaker is child neurologist at the Center for Childhood White Matter Disorders, VU University Medical Center, Amsterdam, the Netherlands. Nicole does research in leukodystrophies: metachromatic leukodystrophy and hypomyelinating leukodystrophies.

    https://zoom.us/webinar/register/6215804723504/WN_NVZyJQdYSrWEQ32DHkxKxg

  • Wed
    22
    Apr
    2020
    Fri
    24
    Apr
    2020
    SHERATION SANDKEY RESORT-CLEARWATER, FLORIDA

    THE LEGACY OF ANGELS FOUNDATION

    http://www.tloaf.org/sites/default/files/sites/default/files/KTRN%20Flyer.pdf

  • Thu
    23
    Apr
    2020
    Sun
    26
    Apr
    2020
    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/

  • Fri
    24
    Apr
    2020
    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

  • Sun
    26
    Apr
    2020
    london

    MPS Society

    Take part in this iconic 26.2 mile run through the heart of London and raise vital funds for MPS Society.

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

  • Mon
    27
    Apr
    2020
    Wed
    29
    Apr
    2020
    Istituto Superiore di Sanità, Rome, Italy

    European Commission funded project

    The course will provide participants, through the presentation of sample use cases that have long eluded diagnosis, with useful tools, instruments and knowledge on novel strategies to foster solutions of undiagnosed RD cases.

    https://www.ejprarediseases.org/index.php/training-on-strategies-to-foster-solutions-of-undiagnosed-rare-disease-cases/

  • Thu
    30
    Apr
    2020
    5:00 pmLondon Hunt and Country Club 1431 Oxford St W, London, ON N6H 1W1, Canada

    Bethanys Hope Foundation

    Tickets are $200.00 each

    https://bethanyshope.org/event/the-dinner/

  • Fri
    01
    May
    2020
    Sun
    03
    May
    2020
    Painted Turtle Camp in the San Gabriel Mountains of Southern California

    Painted Turtle Camp, the Division of Child Neurology at Stanford University’s School of Medicine, and ALD Connect, Inc.

    Registration fees ($75* total per family) includes a cabin, all meals, and access to the retreat facilities and programming.

    https://give.thepaintedturtle.org/event/ald-family-weekend/e234357

  • Sat
    02
    May
    2020
    12:00 pmnow held LIVE on Facebook at NOON (Eastern Time). https://www.facebook.com/morgansplace/

    The M.O.R.G.A.N. Project

    This is our signature annual fundraising event with all proceeds supporting our Quality-of-life support programs for individuals with special health care needs.

    http://themorganproject.org/upcoming-events/turtle-splash/

  • Tue
    12
    May
    2020
    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

  • Tue
    12
    May
    2020
    3:00 pmAmsterdam, Berlin, Rome, Stockholm, Vienna

    European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN)

    The speaker is pediatric neurologist from the Foundation I.R.C.C.S - Institute of Neurology Carlo Besta, Milan, Italy . She is an expert in pediatric movement disorders.

    https://zoom.us/webinar/register/5715810678599/WN_EAqdftNLSzmPMb7xEvlxSw

  • Wed
    13
    May
    2020
    7:00 pmSaint Arnold Brewing Company 2000 Lyons Ave, Houston, TX 77020

    PALS

    Help PALS fund research and clinical care for patients by contributing to our fundraising efforts

    https://e.givesmart.com/events/gtT/

  • Thu
    14
    May
    2020
    Sat
    16
    May
    2020
    Rock & Roll Hall of Fame Cleveland, Ohio

    NORD

    Its agenda provides patients and families with practical tools for living their best lives with rare diseases and physicians and medical students with insights to take back to their practices and studies.

    https://rarediseases.org/living-rare-forum/

  • Fri
    15
    May
    2020
    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
    15
    May
    2020
    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
    15
    May
    2020
  • Fri
    15
    May
    2020
    Sat
    16
    May
    2020
    at Stockholmsmässan Stockholm, Sweden.

    ECRD

    The largest, patient-led rare disease event in which collaborative dialogue, learning and conversation takes place, forming the groundwork to shape future rare disease policies.

    https://www.rare-diseases.eu/

  • Fri
    15
    May
    2020
    8:30 amLondon, UK

    Global DARE Foundation

    Driving Forward Our Collaborative Network of Clinicians, Researchers, Patients and Caregivers

    https://www.defeatadultrefsumeverywhere.org/2020-refsum-congress-registration

  • Wed
    20
    May
    2020
    12:00 pmwebinar

    Metabol!c Support UK

    Learn about the new gene therapy currently being developed for NKH and ASA, and future developments may also be suitable for those living with other conditions including MSUD, PFIC2, MMA, PA and OTC.

    https://www.metabolicsupportuk.org/webinar/

  • Sat
    23
    May
    2020
    Tue
    26
    May
    2020
    Paris Expo Porte de Versailles, Paris, France

    EAN

    The sessions will focus on showing the novel therapeutic interventions, designed to predict, protect and repair neurodegenerative diseases.

    https://ipp-ean20.netkey.at/

  • Tue
    26
    May
    2020
    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

  • Wed
    27
    May
    2020
    12:30 amOnline

    Facilitated by Suzanne, Flynn, Kathleen O'Sullivan-Fortin, and Tara Meady

    Register for the Zoom Meeting | Join the Zoom Meeting

  • Thu
    28
    May
    2020
    Sun
    31
    May
    2020
    Renaissance Denver Stapleton 3801 Quebec Street Denver, CO 80207

    NTSAD

    https://ntsadannualfamilyconference.com/

  • Tue
    02
    Jun
    2020
  • Sat
    06
    Jun
    2020
    Brooklyn, NY

    Aidan Jack Seeger Foundation

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

  • Sat
    06
    Jun
    2020
    Sun
    07
    Jun
    2020
    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
    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
    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
    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
    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
    Belmar, New Jersey

    Aidan Jack Seeger Foundation

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

  • Thu
    25
    Jun
    2020
    Fri
    26
    Jun
    2020

    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
    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.

     

  • Mon
    06
    Jul
    2020
    Mon
    13
    Jul
    2020

    Metabol!c Support UK

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

  • Fri
    10
    Jul
    2020
    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
    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
    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
    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
    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
    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
    7:00 pmMardi Gras World, 1380 Port of New Orleans Place New Orleans, LA 70130 United States

    United MSD Foundation

  • Wed
    05
    Aug
    2020
    Sturgis, South Dakota

    Aidan Jack Seeger Foundation

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

  • Tue
    11
    Aug
    2020
    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
    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
    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
    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
    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
    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
    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
  • Tue
    01
    Sep
    2020
    Wed
    30
    Sep
    2020
  • Fri
    11
    Sep
    2020
    Minneapolis Greek Festival

    Chloe’s Fight

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

  • Sun
    13
    Sep
    2020
    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
    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
    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
    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
    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
    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
    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
    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
    Morgantown, WV

    Aidan Jack Seeger Foundation

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

  • Thu
    08
    Oct
    2020
    Fri
    09
    Oct
    2020
    Washington, D.C.

    NORD

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

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

  • Fri
    09
    Oct
    2020
    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

    Metabol!c Support UK

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

  • Sun
    11
    Oct
    2020
    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
    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
    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
    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
    Marriott Marquis

    2020 ICNA-CNS Meeting

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

  • Tue
    20
    Oct
    2020

    Krabbe Connect

  • Sun
    25
    Oct
    2020
    Wed
    28
    Oct
    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
    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
    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
    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
    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
    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
    8:00 amtba

    United MSD Foundation

  • Fri
    20
    Nov
    2020
    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
    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
    Temecula, California

    Aidan Jack Seeger Foundation

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

  • Fri
    18
    Dec
    2020
    Birmingham Children's Hospital, Steelhouse Ln, Birmingham B4 6NH, UK

    MPS Society

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

  • Tue
    22
    Dec
    2020
    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


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