News publications and other organizations are encouraged to reuse Direct Relief-published content for free under a Creative Commons License (Attribution-Non-Commercial-No Derivatives 4.0 International), given the republisher complies with the requirements identified below.

When republishing:

  • Include a byline with the reporter’s name and Direct Relief in the following format: "Author Name, Direct Relief." If attribution in that format is not possible, include the following language at the top of the story: "This story was originally published by Direct Relief."
  • If publishing online, please link to the original URL of the story.
  • Maintain any tagline at the bottom of the story.
  • With Direct Relief's permission, news publications can make changes such as localizing the content for a particular area, using a different headline, or shortening story text. To confirm edits are acceptable, please check with Direct Relief by clicking this link.
  • If new content is added to the original story — for example, a comment from a local official — a note with language to the effect of the following must be included: "Additional reporting by [reporter and organization]."
  • If republished stories are shared on social media, Direct Relief appreciates being tagged in the posts:
    • Twitter (@DirectRelief)
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Republishing Images:

Unless stated otherwise, images shot by Direct Relief may be republished for non-commercial purposes with proper attribution, given the republisher complies with the requirements identified below.

  • Maintain correct caption information.
  • Credit the photographer and Direct Relief in the caption. For example: "First and Last Name / Direct Relief."
  • Do not digitally alter images.

Direct Relief often contracts with freelance photographers who usually, but not always, allow their work to be published by Direct Relief’s media partners. Contact Direct Relief for permission to use images in which Direct Relief is not credited in the caption by clicking here.

Other Requirements:

  • Do not state or imply that donations to any third-party organization support Direct Relief's work.
  • Republishers may not sell Direct Relief's content.
  • Direct Relief's work is prohibited from populating web pages designed to improve rankings on search engines or solely to gain revenue from network-based advertisements.
  • Advance permission is required to translate Direct Relief's stories into a language different from the original language of publication. To inquire, contact us here.
  • If Direct Relief requests a change to or removal of republished Direct Relief content from a site or on-air, the republisher must comply.

For any additional questions about republishing Direct Relief content, please email the team here.

Rare Diseases

Issues & Solutions

Quick Facts

There are over 7,000 known rare diseases, affecting over 350 million people worldwide.

Many rare diseases do not have available treatment yet, but Direct Relief is able to provide treatment for spinal muscular atrophy (SMA), pediatric acute lymphoblastic leukemia (ALL), and three lysosomal storage disorders (LSDs).

Through its partnerships with Biogen, Amgen, and Takeda, Direct Relief helps patients living with certain rare diseases by providing access to critical therapies, some requiring lifelong supply, in countries where these live-saving therapies are not otherwise available.

Rare Diseases, Explained

A disease or disorder is defined as rare when it affects fewer than 1 in 2,000 people in Europe and fewer than 200,000 in the United States.

Access to treatment for those with rare or special conditions can be a big challenge, even in upper income countries in North America and Western Europe. For rare diseases, the mean length of time from symptom onset to an accurate diagnosis is around 4.8 years – it isn’t difficult to see how much longer this might be in less developed parts of the world.

Some 7,000 rare diseases have been identified, and treatment exists for less than 5%. This means that for many people with rare diseases, access to therapies can be difficult and sometimes impossible due to lack of available treatment.

Access to Therapies for Rare Diseases

Since 2013, Direct Relief has partnered with Shire (now Takeda) on its global Charitable Access Program to improve access to enzyme replacement therapy for those living with three lysosomal storage disorders (LSDs) – Fabry Disease, Gaucher Disease, and MPS II (Hunter’s Syndrome) – across 14 countries and continue to enroll new patients to this program each year.

In 2019, Biogen and Direct Relief launched a pilot of the Spinraza Individual Patient Humanitarian Access Program to provide access to their biological therapy to patients with spinal muscular atrophy (SMA) in India. In 2020, Amgen and Direct Relief launched a program to provide a rare cancer therapy to eligible pediatric patients with acute lymphoblastic leukemia (ALL) in India in 2020 and will expand into Pakistan.

Through these programs, Direct Relief and donor companies are providing biological cold chain therapies, free-of-charge to eligible patients, ensuring proper temperatures are maintained throughout the supply chain.

Direct Relief serves as a liaison between companies, independent medical experts, patients and their families, treating physicians, and medical facilities. To ensure patient selection is made on a clinical and ethical basis, each program enlists a group of global medical experts for each relevant disease, independent of Direct Relief and pharmaceutical companies, to review the blinded applications.

Neither Direct Relief nor the drug manufacturers are involved in the decision-making process. The goal is to ensure patients have a chance to improve their health and lives through a regular donation of treatment, and to ensure all medical-related components are in place for treatment to be provided effectively.

Direct Relief also works to educate physicians about these diseases and to ensure continued access to therapy and related medical supplies.

Giving is Good Medicine

You don't have to donate. That's why it's so extraordinary if you do.