Websites linking back to rarediseases.org

Спинальная мышечная атрофия, помощь, информационная поддержка регистры международные Украинский Spinal muscular atrophy SMA Registry

The Cystinosis Research Network is a volunteer, non-profit organization dedicated to supporting and advocating research, providing family assistance and educating the public and medical communities about cystinosis.

The National Adrenal Diseases Foundation informs, educates, and supports those with adrenal disease and their families to improve their quality of life.

Join the National Organization for Rare Disorders (NORD) in raising awareness for the 30 million patients with rare diseases in the U.S. on Rare Disease Day®.

At ARG, we connect individuals with rare diseases to organizations driven to develop potential treatments. We advance smarter clinical trials.

Your starting point to access the low vision resources of the world

Sometimes I ramble on about things

Украинская организация родителей детей-инвалидов больных фенилкетонурией, история создания, цели и задачи, деятельность организации

Community website for The Atypical HUS Foundation

FG Syndrome is an X-linked genetic syndrome, believed to affect both boys and girls; which causes a variety of physical anomolies, developmental delays, and special health needs.

The largest keratoconus support community and blog

My Care Plus is a secure, convenient website developed especially for patients. My Care Plus allows patients to view their Personal Health Records whenever they need them.

NORD, a 501(c)(3) organization, is the leading patient advocacy organization dedicated to improving the lives of individuals and families living with rare diseases.

The Quad Spot is the blog for the disabled, elderly, chronically ill & shut in and shares the tips & Tricks Jessica Kennedy DAWS (Differently-Abled Writer & Speaker) learned being a ventilator-dependent quad.

LFS Association provides a wide range of information, advocacy, and support services for individuals and families with Li-Fraumeni Syndrome.

‘Abortion is never black and white, it's a personal journey’

Medically accurate, up-to-date information about the periodic paralyses accessible to patients, caretakers and physicians.

CMTA Headlines:

Blog o chorobach rzadkich

If you or a family member have been diagnosed with Pyruvate Kinase Deficiency, you probably have many questions running through your head. What kind of disease is it? Will I or my family member be able to live a normal life? What precautions should I take? The mission of this website is to answer your questions.…

A residential school for people of all ages with intellectual disabilities.

RareConnect promotes global conversation and collaboration to improve the lives of rare disease patients and assist the organizations that serve them. RareConnect is an online social network for patients and families who live with one of over 6,000 rare diseases to connect with one and other to support and share vital experiences on aspects of living with a rare disease. Organized into disease specific communities, the platform also provides links to quality information, clinical trials and research publications and provides an opportunity for international networking and collaboration between patient organizations.

a circadian rhythm sleep disorder

Life's a Polyp is a personal health blog of my journey with Familial Adenomatous Polyposis, a rare genetic disease resulting in cancer & other issues.

The Galactosemia Foundation is a support organization for people with galactosemia and their families.

Dup15q Alliance provides family support and promotes awareness, research and targeted treatments for chromosome 15q11.2-13.1 duplication syndrome.

Providing online information, support, and professional development on topics related to the transition from school to adult life for youth with disabilities.

The Hemophilia Federation of America is the largest patient-focused group for those with Hemophilia, von Willebrand Disease, and other bleeding disorders.

Learn about RAVICTI as a treatment option for urea cycle disorders (UCDs), and hear from others living with a UCD. See safety.

Federación Mexicana de Enfermedades Raras

a medical genetics information resource for physicians, genetic counselors, healthcare providers and researchers

The ORIGINAL Cystinosis Foundation. We are a non-profit organization, with more than 34 years of International experience in supporting and educating families and the medical community through the dissemination of educational literature, funding research, and annual conferences.