Ullrich congenital muscular dystrophy
Ullrich congenital muscular dystrophy is a form of congenital muscular dystrophy with specific features such as bendiness in the joints of the hands and feet, curvature of the spine and respiratory weakness. Initial symptoms present at birth.
The Muscular Dystrophy Campaign leads the search for treatments and cures for congenital muscular dystrophies (CMDs) and other muscle-wasting conditions. We provide expert advice and support for individuals and families living with Ullrich, and for health professionals.
Our National Conference, taking place on 12 October 2013, will include a congenital muscular dystrophy specific workshop, led by Shirley Crosby. Find out more and book your place today.
In this section you'll find the latest information about Ullrich congenital muscular dystrophy and helpful resources.
The Muscular Dystrophy Campaign supports families by:
- funding research projects and providing regular information about research progress
- supporting the training and development of the next generation of scientists and funding clinical trials co-ordinators in the drive towards potential treatments
- collaborating with the American patient organisation CureCMD to support the international congenital muscular dystrophy registry (CMDIR).
- working with, and providing training and education for, NHS-funded care advisors
- taking a leading role in driving NHS support for neuromuscular networks and spearheading campaigns to improve access and quality of specialist care
- offering advice and information and enabling people to overcome difficulties through our advocacy service
- providing grants towards specialist equipment to help people to live as independently as possible
- helping people to connect with each other through our local Muscle Groups, online via TalkMD, at conferences and events; and through Trailblazers, our national network of young disabled people.
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There is a role for everyone in the fight against muscle-wasting conditions. We are a small but strong community of people in the UK and we are determined to win this fight, together.
There are opportunities to get involved in a variety of ways, such as:
- enrolling in the CMDIR patient registry
- connecting with others affected by congenital muscular dystrophies
- being an advocate for our campaigning and media work
- sharing your story to inspire others
- establishing a family fund
- participating in fundraising events
Ullrich CMD Appeal
We are seeking to raise a total fund of £180,000 through donations and fundraising activities, to enable a 'special' research grants call for this condition. The Ullrich CMD Appeal has been established to fund research projects focused on developing therapies and eventually clinical trials into Ullrich CMD. Please make a donation to support this work.
Support and information
We are here for you and your family. For more information about Ullrich congenital muscular dystrophy or for support, contact our freephone support line or send us an email (Monday to Friday 8.30am - 6pm): 0800 652 6352 (freephone) firstname.lastname@example.org
Beating muscle-wasting conditions is a massive challenge requiring a collective effort, but there has never been a better time to join us - together, we can win the fight.
- Find a clinical trial See an overview of current clinical trials into muscle-wasting conditions in the UK and around the world
- Research we are funding See the current world-class pioneering research into potential treatments and cures that we are funding
- Publications Read our free publications including our expert factsheets about medical conditions and comprehensive guides on adapting your home
- Your stories Read about families and individuals who are affected by muscle-wasting conditions