upcoming events
-
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
-
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
-
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
-
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
-
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/
Latest news
Newborn Screening Saves Lives Reauthorization
Research Study: Impact of COVID-19 on People Living with Rare Diseases and Their Families
Patient Focused Drug Development Meeting on Krabbe Disease
Taking Care of Yourself When Taking Care of Others
Minoryx Nexus Clinical Study for cALD
#GivingTuesdayNow is May 5, 2020
Share your story
Dylan Joseph Changle, Krabbe Disease
Kristie DeMarco, Refsum Disease
