We work together with a number of organisations who all aim to raise awareness of Lymphangiomatosis and similar conditions and to help fund research. Visit some of our friends to see the work they do.
Alfie’s Trust’s affiliation with this great institution started when Alfie was first diagnosed. Since then we have built a great relationship with the doctors there. GOSH deals with the most cases of Lymphangiomatosis in the UK.
The LGDA is the hub of all organisations who aim to support those affected by Lymphangiomatosis and Gorham’s Disease. We implore all patients to complete the LGDA international patient registry. The registry collects and stores medical information, family history and other related information from patients with the condition.
This information can be used for medical research and clinical trials to help provide a better understanding of these diseases and how to treat them.
If you are a patient and wish to join the registry please click here
Alfie’s Trust works closely with the LGDA-E, which is also a patient organisation set up to help those throughout Europe who suffer similarly to Alfie. Tracy Milne, founder of Alfie’s Trust is Chairperson of the LGDA-E.
The main aim of the LGDA-E is to give support to as many patients as possible by offering multi-lingual website, allowing people across Europe access to help and information.
The organisation is constantly looking for the wider community to become more involved. If you could provide any support please visit the website.
If you’re in Europe, newly diagnosed and are looking for support and advice, please contact gro.e1503340132cnail1503340132ladgl1503340132@ofni1503340132
RDUK was established in 2008 by Genetic Alliance UK, the national charity of over 160 patient organisations supporting those affected by genetic conditions. The group was set up in response to the European Commission’s Communication on Rare Diseases: Europe’s Challenges.
The organisation aims to aid the healthcare needs of the millions of people living with rare diseases who struggle to get access to integrated care and support from the NHS.
The work of Rare Disease UK primarily involves raising awareness for rare conditions, relaying the experiences of patients to assist with the formation of health care policies and to provide a collective voice for sufferers across the UK.
The European Organisation for Rare Disease, EURORDIS, is a non-governmental alliance of patient organisations representing 634 rare disease groups across 58 countries.
They are the voice of 30 million people affected by rare diseases throughout Europe.
EURORDIS’ aim is to create a European-wide community of patient organisations and people living with rare diseases. The group aims to be their voice at the European level, helping patients to fight against the impact of rare diseases on their lives.
To achieve its overall aim EURORDIS focuses on activities which look to empower rare disease patient groups, raise awareness of conditions and emphasise their seriousness as a health issue, to improve the accessibility of patients to information, treatment and support when dealing with rare conditions. Additionally, the group is committed to promoting research into rare diseases and new drugs which may be developed.