Many rare diseases have limited information. Currently GARD is able to provide the following information for Spastic paraplegia neuropathy poikiloderma:
8 Symptoms
This section is currently in development.
Patient advocacy and support organizations offer many valuable services and often drive the research and development of treatments for their disease(s). Because these organizations include the life experiences of many different people who have a specific disease, they may best understand the resources needed by those in their community. Although missions of organizations may differ, services may include, but are not limited to:
What do disease-specific organizations do?
Some organizations build a community of patients and families impacted by a specific disease or group of related diseases. These organizations usually have more disease-specific information and services, including helping new members find others who have the same disease.
What do organizations that focus on a medical condition do?
Some organizations build a community of patients and families impacted by a medical condition, like epilepsy, or related conditions, like heart problems, that may also be a symptom in other diseases. These organizations usually have information and services focused more on the medical condition(s), but may also have information about associated diseases.
What do umbrella organizations do?
Rare disease umbrella organizations focus on improving the lives of all those impacted by rare diseases through education and advocacy efforts. Umbrella organizations provide a range of services for patients, families, and disease-specific organizations.
4 Organizations
Organization Name
Organization Type
Service
Country
Language
Spastic Paraplegia Neuropathy Poikiloderma
Information
United States
English
Spanish
Spastic Paraplegia Neuropathy Poikiloderma
Information
United States
English
Spastic Paraplegia Neuropathy Poikiloderma
Information
United States
English
Spastic Paraplegia Neuropathy Poikiloderma
Information
Research
United States
English
Spanish
4 Organizations
Research increases what we know about rare diseases so that people can get a diagnosis more quickly and can know what to expect. Research also helps doctors better understand how well a treatment works and can lead to new treatment discoveries. It may even help improve diagnosis and treatment of more common diseases.
Current clinical studies can be found by using ClinicalTrials.gov (see below). Doctors, other trusted medical professionals, and patient organizations may also be aware of studies.
To determine whether a study may be appropriate:
How Do You Find the Right Clinical Study?
Current clinical studies can be found by using ClincalTrials.gov. Doctors, other trusted medical professionals, and patient organizations may also be aware of studies. Researchers from participating institutions use the database to search for patients or healthy volunteers who meet their study criteria.
Current clinical studies can be found by using ClinicalTrials.gov (see below). Doctors, other trusted medical professionals, and patient organizations may also be aware of studies.
To determine whether a study may be appropriate:
How Do You Find the Right Clinical Study?
Current clinical studies can be found by using ClincalTrials.gov. Doctors, other trusted medical professionals, and patient organizations may also be aware of studies. Researchers from participating institutions use the database to search for patients or healthy volunteers who meet their study criteria.
Last Updated: February 2023