How the H63D Research Consortium is helping patients with a homozygous mutation of HFE gene H63D

The International H63D Syndrome Research Consortium (www.h63d-syndrome.org) is a collaborative effort of scientists, clinicians, and volunteers who are dedicated to improving the understanding of the H63D mutation and its associated conditions, such as hereditary hemochromatosis (rare with this mutation), H63D syndrome (more common and more dangerous) and other sequelae due to this mutation. The H63D consortium brings together experts from various fields to share their knowledge and resources to conduct research, develop new treatments, and improve patient care.

One of the main benefits of the H63D syndrome research consortium is that it knows which doctors are specialized in treating "H63D syndrome" and other health issues caused by a mutated HFE gene H63D.

The association also provides a platform for patients to get involved in research and clinical trials. By participating in these studies, patients can help advance our understanding of this condition and contribute to the development of new treatments that could benefit themselves and others with the H63D mutation.

What is more, the consortium provides an opportunity for patients to connect with other individuals who have the same condition, allowing them to share experiences, provide support, and gain a sense of community. This can be especially helpful for patients who may feel isolated or misunderstood because of their condition.

In addition, the H63D syndrome research consortium provides resources and education for patients and their families, including information about the condition, genetic testing, treatment options, competent doctors and management strategies. By increasing awareness and understanding of the H63D mutation and its associated conditions, patients can better advocate for themselves and receive more effective care.

Overall, the H63D syndrome research consortium is a valuable resource for patients, as it provides a collaborative and patient-centered approach to research and clinical care. By working together, researchers, clinicians, and patients can improve the understanding of this condition and develop more effective treatments and management strategies to improve the lives of those affected by the HFE gene H63D mutation, especially patients with the difficult to treat "H63D syndrome" (less commonly known as "Oslo syndrome") which is not hemochromatosis but rather the "iron sibling of Wilson's disease".

INTERNATIONAL H63D SYNDROME RESEARCH CONSORTIUM

PRESS CONTACT

c/o LCG Greece
Dr. Carolina Diamandis
16 Kifissias Avenue
115 26 Athens
Hellenic Republic
European Union

CONTACT FOR THE PUBLIC

E-mail: contact form on website
Phone: +30 21 123447-27
https://www.h63d-syndrome.org

The H63D Consortium is an independent, international and non-profit association.

This release was published on openPR.