News and Events

upcoming events

All
Upcoming
2020
2021

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
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

Latest news

Newborn Screening Saves Lives Reauthorization

ulfunited June 23, 2020 No Comments

Thank you ALL for supporting last year’s sign on letter to add language to Newborn Screening Saves Lives Reauthorization which would fund states in order…

Research Study: Impact of COVID-19 on People Living with Rare Diseases and Their Families

ulfunited June 22, 2020 No Comments

The novel coronavirus pandemic can have a serious impact on people with rare diseases and their families. Yet, not much is known about it. We…

Patient Focused Drug Development Meeting on Krabbe Disease

ulfunited June 8, 2020 No Comments

NORD invites you to register for an externally-led Patient-Focused Drug Development (EL- PFDD) virtual meeting on Krabbe disease, taking place Thursday, October 29, 12:30 – 4:30 pm…

Taking Care of Yourself When Taking Care of Others

ulfunited May 21, 2020 No Comments

from BlueCross BlueShield of Illinois Look around and you’ll see caregivers. In the U.S., 1 in 3 adults give care to others. Caregivers may be…

Minoryx Nexus Clinical Study for cALD

ulfunited May 13, 2020 No Comments

Minoryx Therapeutics is recruiting for a clinical trial focusing on cALD in Europe. The NEXUS clinical trial is a phase 2, open-label clinical study designed…

#GivingTuesdayNow is May 5, 2020

ulfunited April 25, 2020 No Comments

Join the Global Day of Giving and Unity! #GivingTuesdayNow is set to take place on May 5, 2020 as an emergency response to the unprecedented…

upcoming events

#CureKrabbe Campaign for Leukodystrophy Awareness Month

Leukodystrophy Awareness Month

Trek Kilimanjaro

MPS III Expert and Patient Meeting

Weekend of Hope and Remembrance

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

Sam Buck, VWM

Contact the ULF