Advocacy Organizations
RNE realizes it is very important for patients and families to connect with others facing similar medical problems, and to build friendships within their disease-specific communities.
RNE is also aware many excellent regional and national organizations exist that work hard to advocate for their disease-specific communities; educating and lobbying for the unique needs of their patients and families.
RNE applauds these advocates and organizations for the enormous benefit they provide to the rare disease community, and wants to help bridge gaps between these groups and the patients who need them.
RNE's mission includes connecting rare disease patients and families with resources designed for their needs. We are creating a list of disease-specific organizations and advocacy groups.
We would love to add YOUR group to our list!
If your organization is not yet listed, please let us know! Send your group name, a web address to which we can link, and a brief description of your group's mission to info@rarenewengland.org
(Note: RNE is in progress of uploading the many different organizations and will show a much broader listing soon, along with a brief definition of what each has to offer.)
The FOD Family Support Group is an all-volunteer international/national Support Group for Families living with the rare metabolic disorders called Fatty Oxidation Disorders. We offer support and Family networking via Facebook/Google Groups/phone and Skype calls, probono grief support, an International Metabolic Conference every 2 years in the US, an online newsletter twice a year and an invaluable website of practical and research/medical information for laypersons and professionals. Our websites include fodsupport.org and bereavedparent.com
The UMDF Mission is to promote research and education for the diagnosis, treatment and cure of mitochondrial disorders and to provide support to affected individuals and families.
NTSAD leads the fight to treat and cure Tay-Sachs, Canavan, GM1, Sandhoff and related genetic diseases, and support affected families and individuals in leading fuller lives. NTSAD cultivates, fosters and funds research via its Research Initiative, supports families and individuals with resources, mentors and an annual family conference. NTSAD also advocates for families and educates the public and health professionals about the risks of being a carrier of these genetic diseases.
The mission of Epidermoid Brain Tumor Society, a 501(c)3, is to inform, educate, support and fund research for those affected by the epidermoid brain tumor.
Also find EBTS on Facebook: Here.
Adrenal Insufficiency United is committed to enhancing the lives and health of friends and family affected by adrenal insufficiency. They will do this by raising awareness, providing support, and working to ensure emergency protocols are in place to treat adrenal crisis in all settings.
AIU sees a future where protocols to treat adrenal crisis are Nationwide, where needless suffering and death are prevented, and where awareness leads to new and better treatment options . Every person affected by adrenal insufficiency needs a chance to reach their full potential.
Organic Acidemia Association is a nonprofit parent support organization. They offer support through their website, Facebook group, newsletter and Google Group to families dealing with rare organic acid disorders. They also host a family conference every other year.
It is the mission of the Fabry Support & Information Group to provide the
Fabry Community and the general public with information, advocacy,
education, and compassionate support to improve the quality of live and the
quality of care for Fabry patients and family members.
FSIG is a leading organization in the fight against Fabry disease with many
services and support for the Fabry community. Working together we hope a
cure for Fabry will be found.
RNE is proud to be a Rare Foundation Alliance Member of Global Genes!
The Cystinosis Research Network is a non-profit organization dedicated to supporting and advocating research, providing family assistance and educating the public and medical communities about Cystinosis.
Cystinosis is a rare, genetic metabolic disease that causes the amino acid cystine to accumulate in various organs of the body. Without specific treatment, children with Cystinosis develop end stage kidney failure at approximately age nine. As treatments have improved, children can now live into adulthood and live productive lives.
For more information, visit our website or social media channels: Facebook: https://www.facebook.com/CystinosisResearch
Twitter: https://twitter.com/CystinosisCRN
Instagram: @CystinosisResearchNetwork
The New England Regional Genetics Group was formed in order to serve as a consortium of genetics service providers, public health planners, consumer groups, and gederal and state maternal and child health personnel in New England. We serve as a forum for the discussion of region-wide concerns regarding the provision of optimal services in clinical genetics and genetics education, and to undertake specific programs for the enhancement of genetics services in New England.
New Hampshire Ehlos-Danlos Syndrome Coalition
NH EDS Coalition are a volunteer operated nonprofit organization formed to create awareness and educate our communities about Ehlos-Danlos Syndrome so that those affected may have earlier recognition and better care. They provide resources and support to people living with EDS, their families, friends, caregivers, and healthcare providers.
Link to NH EDS Support Group Site through EDS Awareness.com:
Mesothelioma is a rare and deadly form of cancer caused from asbestos exposure. This site offers extensive prognosis support and is an information source for mesothelioma online.an organization dedicated to helping patients and loved ones affected by lung-related diseases, such as lung cancer and mesothelioma, in the United States and Canada. They offer, all for free:
• On-staff doctor and nurse
• 24-hour live chat support
• A team of Patient Advocates
• Information about current clinical studies
Unique – The Rare Chromosome Disorder
Support Organization
Formed in 1984, Unique is a UK-based charitable organisation working internationally to inform, support, matchmaker and network with any families affected by rare chromosome disorders and some rare novel autosomal dominant single gene disorders leading to intellectual impairment and developmental delay among other symptoms. Unique also assists the clinicians working with families by providing anonymised information about the lifetime effects of these rare disorders.
Unique has published comprehensive, family-friendly, medically-verified information guides to over 200 different rare chromosome and novel gene disorders, all free to download from the group’s website and many now translated into a range of other languages, including Spanish.
More detail about Unique’s work and services can be found at www.rarechromo.org
Mesothelioma Guide is your trusted ally in the fight against asbestos-related cancer. We provide up-to-date information about living with mesothelioma, top doctors, treatment options and much more.
Malignant mesothelioma is a rare cancer of the protective lining around important organs such as the lungs. It is cause by asbestos and takes 20-40 years to develop after exposure.
FOUNDATION MISSION AND FOCUS:
♦ Patient-Family/Caregiver Education And Support
♦ Patient Advocacy Resource Program Collaboration
♦ Leiomyosarcoma Research Funding Support
♦ Organizational Collaborative Partnerships -Bridging Patient Resource Assistance
