Patient Advocacy Groups
Over the past 15 years, CENTOGENE has been working alongside the rare disease community to deliver life-changing answers and solutions. We recognize that patient advocacy groups play an essential role by raising awareness, forging progress, and helping bridge the gap between patients, physicians, and rare disease-focused companies.
Working Together to Make a Difference
Scroll through our curated list of rare disease organizations to find the right one to help guide you through your rare disease journey.
International Gaucher Association (IGA)
Worldwide
The IGA is a patient led international umbrella group – composed of 53 member associations representing 51 countries around the world. Their vision is a world where all Gaucher patients have access to the treatment and care they need and there is the possibility of a cure.
Niemann-Pick Disease Alliance
Worldwide
An active consortium of patient organizations dealing with NPD. You can find a lot of information and links on their website. They curate a global registry of all NPD patients to which you can enroll, and they promote sharing of knowledge, resources and skills between patient groups. The NPD alliance organizes campaigns to improve diagnosis, publishes regular news (including updates on the latest trials) including events pages.
The Michael J. Fox Foundation for Parkinson's Research
Worldwide
The Michael J. Fox Foundation is dedicated to finding a cure for Parkinson's disease through an aggressively funded research agenda and to ensuring the development of improved therapies for those living with Parkinson's today.
Remember The Girls
Worldwide
Remember The Girls' mission is to raise awareness of the many issues facing female carriers of x-linked genetic disorders; to provide a forum for x-linked females to share their stories, ask questions, provide and receive emotional support, and develop friendships; to advocate for increased attention of the medical community to the physical and emotional issues of females who carry x-linked disorders; and to provide financial support to carriers of X-linked disorders for medical treatment and diagnosis, as well as those seeking to build families free of genetic disease through assisted reproductive technologies and adoption.
Rare Diseases International (RDI)
Geneva, Switzerland
Rare Diseases International is a global alliance of individuals living with any rare disease. It aims to bring together national and regional rare disease patient organizations and create a strong common voice to advocate for rare disease as an international public health priority. The website includes background info about the groups activities and details of member organizations.
Genetic Alliance
Washington DC, USA
The Genetic Alliance is a large nonprofit advocacy organization. They have a number of tools and programs to promote access to information, research and services for patients and families affected by genetic diseases. In addition, the Genetic alliance has a network of more than 1200 disease-specific advocacy organizations as well as universities, companies and government agencies which they can help you to engage with.
Amyloidosis - The International Society of Amyloidosis (ISA)
Germany, Italy, UK, USA
The ISA is an organization of scientists and doctors engaged in research or practice concerning the disease amyloidosis. It contains basic information about the disease and links to research and medical centers around the world involved in amyloidosis treatment.
Cystic Fibrosis
Worldwide
This is a large online network for the cystic fibrosis international community. The site hosts an active online cystic fibrosis forum plus information on clinical trials, gene therapy, testing, associations, research and events. You can also sign up for a newsletter.
Cystic Fibrosis Worldwide (CFW)
USA
Started in 2002, CFW is a nonprofit organization that has provided a variety of programs to aid CF communities. The website has some information on CF and details of many other nonprofit CF organizations around the world.
Cure Cystinosis International Registry (CCIR)
Worldwide
Rare Diseases International is a global alliance of individuals living with any rare disease. It aims to bring together national and regional rare disease patient organizations and create a strong common voice to advocate for rare disease as an international public health priority. The website includes background info about the groups activities and details of member organizations.
Fabry International Network
UK
FIN is a network of patient organizations from over 45 countries around the world. FIN aims to collaborate, communicate and promote best practices to support those affected by Fabry disease. The website has in depth information about the disease, diagnosis, its symptoms and how to manage these, plus recent articles published on the subject. You can find details on the network’s members and access news and sign up for their newsletter.
Glycoprotein Storage Diseases - The International Advocate (ISMRD)
California, USA
ISMRD is an international consortium of nonprofit organizations who advocates for families and patients affected by one of the following disorders: Alpha-Mannosidosis, Aspartylglucosaminuria, Beta-Mannosidosis, Fucosidosis, Galactosialidosis, Sialidosis (Mucolipidosis I), Mucolipidosis alpha/beta, Mucolipidosis III Gamma, Schindler Disease.
Leukodystrophy Alliance - WLA
Worldwide
The World Leukodystrophy Alliance (WLA) is a consortium of non-profit organizations all of which work to improve access to quick diagnosis, and the best therapies for leukodystrophy patients. You can find some information about leukodystrophies on their site, details of all the member organizations as well as info on an annual conference, and other meetings and fundraising events.
PKD International
Austria, France, Germany, Italy, Switzerland, UK
A global alliance of patient organizations focused on research towards improving the outcome for those with polycystic kidney disease. The website contains info on the disease, a Place where you can sign up for news updates and links to associated organizations as well as PKD research and trials databases.
International Pompe Association (IPA)
The Netherlands
The IPA is an umbrella organization for Pompe disease patient groups worldwide. It aims to coordinate activities and share experience and knowledge across the different groups. It has a comprehensive website with a good number of links about the association, its members, information brochures and updates on recent clinical trials.
Tuberous Sclerosis Complex International (TSCi)
California, USA
The TSCi is a consortium of organizations supporting those affected by tuberous sclerosis complex. As well as promoting awareness, the group is a platform through which to share information, and it co-funds research projects. The website contains many links to information about the disease including upcoming meetings, research updates, and details of member organizations.