Rare disease is a health condition that affects a small percentage of people. It is a condition that affects fewer than 200,000 people Most rare diseases are genetic and thus are present throughout the person’s entire life, even if symptoms do not immediately appear. Indian Organization for Rare Diseases (IORD) aims in making rare disease as easily diagnosed and treated as common diseases like Diabetes, TB, Hypertension, and AIDS.
Indian Organization for Rare Diseases is coined in short form as a (IORD) is a non – profit organization, that works within the collaboration with Hyderabad based institute, which is a well known NGO. It works for the well being of ataxia patients, so that they can perform daily work with comfort and ease.
The goal of IORD is to make physiotherapy and rehabilitation centers of ataxia. It detects the neurological structures and affecting the functions of patient and to improve the functional level of the patients, through various techniques. IORD enable suffers of ataxia patients to lead a normal life and attached in mainstream with other members of society.
IORD provides various support groups that help ataxia patients in performing day to day activities. Some of them are-
Condition – Specific Groups: It mainly focuses on rare or genetic condition. Some groups may offer various services such as gaining the support of local, state or federal legislators, finding a doctor and organizing conferences etc.
Umbrella Groups or Alliances: In this many non-profit groups join together to tackle larger issues. Umbrella groups include National Organization for Rare Disorders (NORD), Genetic Alliance Global Genes (GAGG), and European Rare Disease Organization (EURORDIS). This also includes Orphan Drug Act, the Genetic and Information Nondiscrimination Act and gives information and resources for specific medical conditions.
General Support Groups: Organization mainly focuses on the symptoms of vision loss or developmental disabilities. Some nonprofit groups also have a focus on the parts of the body or body system, such as liver or the immune system. These groups tend to offer general information, resources, and services to any family in dealing with the challenges of disabilities
Medical Information Support: Many non- profit groups help people to connect with each other and provide medical information that is easy and understand to learn more about our medical condition. It also helps to connect online or in person through various media such as Facebook, Summer Camps, Twitter, Yearly Conferences to get support from others to tackle with the disabilities
Addressing Challenges & Opportunities: Patients and stakeholders living with rare diseases bring together for debates and discussions. They also facilitate patients with multinational private- public partnerships. Individuals and families affected by rare medical condition might look for non- profit support for different reasons.
Functions of IORD
Creating awareness for rare diseases all over India using mass media, newspapers, television, social media, pamphlets and posters.
Obtaining concessions from the local governments (as health is a state subject in India) for travel, treatments and jobs.
Advocating investments in rare disease research, diagnosis and drug development.
Working with the insurance regulatory agency to ensure non-discrimination in health insurance based on the genetic constitution of an individual.
Organizing national and international conferences in India on rare disorders to create awareness and promote research and development of therapies.
Providing assistance for rare disease patients to the largest possible extent
AAS has joined hands with IORD.So all the patients of AAS can be benefited with activities IORD.It will help ataxia patients and their care takers to cope up with this disability, and the struggle they have faced, so that they does not feel isolated and alone in life.