International Patient Organisations

RP Fighting Blindness

RP Fighting Blindness is a medical research charity that provides support and information to people in the UK affected by retinitis pigmentosa (RP) and related conditions.

W: www.rpfightingblindness.org.uk

Usher Syndrome Coalition

The Usher Syndrome Coalition’s mission is to raise awareness and accelerate research for the most common cause of combined deafness and blindness. The Coalition also provides information and support to individuals and families affected by Usher syndrome.

W: www.usher-syndrome.org

Sense

Sense is a national UK charity that supports and campaigns for children and adults who are deafblind.

W: www.sense.org.uk

Molly Watt Trust

The Molly Watt Trust was set up to make a difference to those living with Usher Syndrome. Their main focus is raising awareness of the condition and identifying items of equipment/technology that can enhance life with the condition.

W: www.molly-watt-trust.org

Choroideremia Research Foundation

The Choroideremia Research Foundation Inc. is an international, non-profit organisation dedicated to raising funds to find a treatment or cure for choroideremia, a rare inherited retinal degenerative disease that causes blindness.

W: www.choroideremia.org

LHON Society

The LHON Society provides support and information to those in the UK  who are affected by Leber Hereditary Optic Neuropathy (LHON), their families and health care professionals. In addition, they facilitate research into understanding and seeking ways of preventing and ultimately reversing sight loss in LHON affected patients.

W: www.lhonsociety.org

Macular Society

The Macular Society is the national UK charity for anyone affected by central vision loss.

W: www.macularsociety.org

Retina International

Retina International is a voluntary charitable umbrella association of 33 national societies, each of which is created and run by people with retinitis pigmentosa (RP), Usher syndrome, macular degeneration and allied retinal dystrophies, their families and friends.

W: www.retina-international.org

Foundation Fighting Blindness

Foundation Fighting Blindness are a US medical research charity whose mission is to drive the research that will provide preventions, treatments and cures for people affected by retinitis pigmentosa (RP), macular degeneration, Usher syndrome, and the entire spectrum of retinal degenerative diseases.

W: www.blindness.org

Vision Aware

VisionAware supports adults who are losing their sight by providing information, daily living techniques, a directory of services and a supportive online community. The American Foundation for the Blind (AFB) and Reader’s Digest Partners for Sight Foundation launched VisionAware as a free, easy-to-use informational website for adults with vision loss, their families, caregivers, healthcare providers, and social service professionals.

W: www.visionaware.org

European Rare Disease Organisation (EURORDIS)

EURORDIS is a non-governmental patient-driven alliance of patient organisations representing 633 rare disease patient organisations in 59 countries. They are the voice of 30 million people affected by rare diseases throughout Europe.

W: www.eurordis.org

RareConnect

RareConnect.org is an online social network for patients and families. It was created by EURORDIS (European Rare Disease Organisation) and NORD (National Organisation for Rare Disorders) to provide a safe space where individuals and families affected by rare diseases can connect with each other, share vital experiences, and find helpful information and resources. Communities for specific conditions are built in partnership with patient groups who help create, moderate and maintain the forum.

W: www.rareconnect.org/en

European Patients Forum

The European Patients’ Forum is an umbrella organisation that works with patients’ groups in public health and health advocacy across Europe.

W: www.eu-patient.eu