Helping patients find information when they are discovering their disease
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Featured Support Groups
Connect with these highly rated patient advocacy groups that are making a difference in their communities
Lightning and Love Foundation
To raise awareness, advance scientific research through fundraising and advocacy, and find a cure for diseases caused from mutations in the THAP12 gene ultimately transforming the lives of those affected; and in turn helping change the landscape and providing knowledge and hope for all people living with ultra-rare diseases.
Albinism Fellowship
The Fellowship is a positive and sociable volunteer-run organisation that aims to provide information, advice and support for people with Albinism and their families. We also provide information about the condition to professionals working with people with Albinism. All our Trustees are people with Albinism or parents of children with Albinism.
Lymphoma Action
We are the UK's only charity dedicated to lymphoma, the 5th most common cancer. We’ve been providing trusted information and support for over 35 years, helping thousands of people affected by lymphoma. Our mission is to make sure no one faces lymphoma alone.
Chordoma UK
Over the last few years, Professor Flanagan’s research team and colleagues have taken tumours from patients treated at RNOH (with their consent and ethical approval), and 5 chordoma cell lines have been established from these tumours. 3 other cell lines have been generously donated from other researchers. This means that for the first time, a reasonable number of cell lines are available to screen against a large number of drugs / compounds (1000-2000), some of which are already used in the treatment of other tumours, and some of which are in development. By studying the effect of 100s of drugs on the chordoma cell lines we should be able to identify what induces the expression of brachyury. If can identify this/these, we have other potential targets to which drugs can be developed. We will also investigate if we can ‘silence’ brachyury in the chordoma cells using a virus. Research using these cell lines is has recently commenced and it is hoped that the outcome of this work will have an impact on the way all chordoma patients are treated worldwide.
Hrvatska udruga leukemija i limfomi (HULL)
<p>The association works with the aim of helping patients suffering from hematological diseases, developing new research programs and treatment methods, and to this end undertakes the following activities:</p><ul><li>Organizes the treatment of patients suffering from leukemia, lymphoma, and related diseases.</li><li>Collects donations, and develops and implements programs to help patients suffering from leukemia, lymphoma, and related diseases.</li><li>Encourages new methods of treatment, and limits professional and financial assistance for these programs.</li><li>Supports programs to help patients and their families.</li><li>Supports research work in the field of etiology, therapy, and treatment of leukemia, lymphoma, and related hematological diseases.</li><li>Develops unrelated bone marrow transplantation programs in the Republic of Croatia.</li><li>Organizes seminars and consultations, and distributes information from these meetings to health and scientific institutions.</li></ul>
EHE
We advocate for patient support, public awareness, and government funding. We offer support and information for people with EHE no matter where they live. We fund critical research into EHE to develop and deliver new treatments and drug regimens.