The World Association of People Affected by Neurofibromatosis 2 (AMANDOS) is a group made up of patients and families who come together to raise awareness about NF2.
We met through a Facebook group that was created to share experiences related to the disease. In this framework, we discovered that many patients have very little information and that they consider some assessments that lack scientific support as valid.
So, we realized that our goals went beyond containment and that raising awareness among health authorities, doctors and patients was a priority. To achieve this, we formed AMANDOS.
Our goal is to generate a supportive community for people who are diagnosed with NF (all types) and their families. We work to generate awareness in Israel, advance patient rights and treatment as well as raise funds for research. You can learn more about the Israeli foundation at www.nfisrael.org
RDMD NF2 Registry:
RDMD is on a mission to accelerate treatments for patients with a rare disease, affecting 1 in 10 people worldwide. Rare disease patients suffer from a lack of treatment options because a smaller patient group means fewer resources are devoted to the development of treatments. The main challenge is that pharma companies cannot get efficient access to the data needed to bring therapies to market. Patients, however, are highly motivated to contribute, as their lives are at stake and no other options are available. We work on behalf of patients to generate regulatory-grade clinical and molecular data in a central place.
By generating the data proactively–before the next phase of a clinical trial or even before a pharmaceutical program exists–we can de-risk and speed up the entire clinical trial process (currently the probability of success in orphan diseases is a mere 13.5%). Since we invest in the disease area itself, agnostic of any drug, in particular, we can leverage the same data for multiple therapeutic candidates.
Being Positioned is a chronic illness/travel blog where Christina shares her experiences living with NF2 as well as her amazing adventures around the world!
Nerve Tumours UK:
Nerve Tumours UK campaigns, provide support and funds research on behalf of over 26,000 people in the UK who have Neurofibromatosis (NF1 and NF2), Schwannomatosis, and Legius Syndrome. We’re here to improve lives for people with nerve tumors while working towards the day when these conditions will be cured. Nerve Tumours UK (formerly known as The Neuro Foundation) is based in the United Kingdom.
B Happy was established as part of B the Difference in 2013 with the goal to provide all-inclusive hosted trips for selected NF recipients and their families. The B the Difference Board works with highly regarded NF doctors to select NF patients to be considered for this opportunity. The concept of this program is derived from Brandon Merritt’s memory and stems from his curiosity about adventure, love of the great outdoors, and appreciation for the simple moments in life. B Happy allows participants the chance to escape hospital beds, routine tests, MRIs, chemotherapy, and more to forget their everyday worries, while embarking on a journey they will never forget.
NF2 Information Service:
NF2 Information and Services is dedicated to helping people with NF2 who are looking to learn and find the information and services needed to live better, feel better and do better as they deal with their NF2 issues. NF2 Information and Services is based in the United States.
Neurofibromatosis 2 Alliance. It is based in Italy. It is the first national advocacy organization in Europe dedicated totally to NF2 and Schwannomatosis patients, due to the huge misdiagnosis and underdiagnosis of both diseases and the lack of top expert multidisciplinary clinics in Italy and in most European countries. Our CEO and president is the official NF2/schwannomatosis advocacy group representative at the European level.
Brain tumour Ahoy:
To provide online support for anyone who has been affected by brain tumors. Whether you are a patient, carer, friend, or family member. To provide information & awareness for high & low-grade brain tumors. To spread HOPE through positivity & humor. Not only does Brain Tumour Ahoy Inc fundraise for research into a cure, we realize people who are affected by brain tumors need vital support, information, guidance & connectivity to the brain tumor community while they are going through their journey. Brain Tumor Ahoy is based in Australia.
The Neurofibromatosis (NF) Society of Ontario (NF Ontario/NFON) is completely driven and organized by volunteers. Our Mission is to provide support, information, and assistance to families challenged by NF, work closely with clinical and research professionals who specialize in the treatment of NF, help seed and fund research and provide information about Neurofibromatosis to physicians and the public to familiarize them with the disorder for early recognition and diagnosis. Although not everyone is seriously affected by medical problems associated with NF, monitoring for the known complications which can occur is an important part of routine healthcare for individuals diagnosed with the disorder. Our Vision is universal awareness of the disorder, prevention after the discovery of a cause, successful treatment for those affected, and cure to end NF. Neurofibromatosis is based in Ontario, Canada.
The Tumour Foundation of BC has operated for 33 years as the BC Neurofibromatosis Foundation. While we now have a new name and a new look, our commitment to supporting the children and families with neurofibromatosis remains the same-to empower individuals with NF. The Tumour Foundation is here to support you and your family through patient education and support programs, as well as through the new NF clinic we are working on. Tumor Foundation of BC is based in British Columbia, Canada.
We bring together affected individuals and their families to provide them with moral support and help them maintain and improve their quality of life. We promote medical research in order to improve the screening, treatment and care, as well as find a cure, for this genetic disorder, and raise awareness among the medical profession about the needs of affected individuals and their families. We seek, translate, print, publish and distribute relevant documentation, produce a newsletter, L’Entraide NF, and disseminate any appropriate information related to neurofibromatosis through various means, including a Web site. We organize information, training and exchange activities, conferences and lectures, and support the regional association of members and mutual assistance. We promote research. NF of Quebec is based in Quebec, Canada.
ANA – Acoustic Neuroma Association
ANA provides information and networking support for newly diagnosed acoustic neuroma patients. The ANA is based in the United States.
The Texas Neurofibromatosis Foundation ® a nonprofit organization was formed in 1980 to battle neurofibromatosis and to serve the increasing number of men, women, and children in Texas suffering with this disorder.
Our mission is to meet the needs of people impacted by neurofibromatosis by providing comfort, support, education, advocacy, and funding for research for a treatment, prevention, or cure.
Our Mission: Is to find treatments and a cure for neurofibromatosis by promoting scientific research, improving clinical care, providing outreach through education and awareness, while offering hope and support to those affected by NF.
Littlest Tumor Foundation
Our message is simple: tumors in children, we do not like them. The world needs to know about Neurofibromatosis (NF), so we promote awareness daily. Through social media, and collaboration with foundations, associations, and others, we work toward awareness, treatment and prevention, and —someday — a functional cure.
Neurofibromatosis Midwest is dedicated to the increasing number of men, women, and children challenged by neurofibromatosis. We’ve been a nonprofit 501(c)3 since 1982, and we are determined to continue our work to educate, comfort, improve clinical care and fund research for treatments and a cure. We are staffed by people with a personal interest in NF, with real experience, and a determination and motivation to use precious funds in an efficient manner. Our service area includes Illinois, Wisconsin, Indiana, Iowa, Kentucky, and the eastern half of Missouri.